How families can advocate for better disability support 

Caring for a loved one with a disability often means becoming their strongest advocate, especially when looking for the right disability support. 

If you’ve been their carer for a while, you likely already know the systems, the language, and the effort it takes to be heard. But even this familiarity doesn’t always make advocacy easier. 

Many parents and carers we work with tell us they feel tired. Not just physically, but emotionally. Tired from repeating their story, pushing for the right disability support, and thinking about what happens in the future when they’re not around. 

If that’s where you’re at, you’re not alone. We’ve put together a list of options you can refer to if you’re on the journey to creating a better life for the person you care for. 

What advocacy means in disability support 

Advocacy in disability support is about making sure what matters is recognised. In our experience supporting WA families, advocacy is often about steady, ongoing conversations. 

It can look like: 

• speaking up when something isn’t working; 

• asking for support that truly fits your child’s needs; 

• ensuring continuity, so they aren’t constantly adjusting to change; and 

• bringing in others when you need back-up and rest. 

You know your child better than anyone. Your insight is not just helpful, it’s essential to shaping the right disability support around them. 

Why the right disability support matters 

When disability support is consistent, thoughtful, and tailored, it creates stability – not just for your loved one, but for you as well. 

As a parent or carer, you don’t have to hold every piece of support on your own. 

Bringing in trusted, consistent disability support is one way that you can make sure your loved one gets the best care and that you can keep going.  

It can help ease any pressure you’re feeling to do it all – not replacing your role; but sharing it. 

Finding disability support you can rely on 

Not all disability support feels the same. 

For many families, what matters most is: 

1. Continuity – seeing the same people regularly. 

2. Emotional intelligence – support workers who truly understand. 

3. Deep disability understanding – not just understanding tasks, but the person too. 

4. Feeling heard – knowing your voice shapes the support. 

This is where local, relationship-based support can make a difference. 

Advocating for the right disability support can help build that foundation and continuity – creating a circle of care that lasts beyond you. 

Avivo is here for you 

Families caring for an adult child often tell us they need help with more than just tasks, they need a team that understands disability deeply and respects the life they’ve built. 

At Avivo, this is how we approach care – with tailored services that reflect the individual, delivered by passionate Support Workers who live and work locally to the people they help. 

We’re a not-for-profit community organisation where your loved one’s support needs always come first.  

Our reputation is built on nearly 60 years supporting over 55,000 Western Australian families just like you.  

Our support looks like: 

• familiar routines and trusted relationships; 

• Support Workers who understand your loved one beyond surface-level needs; 

• less time explaining, repeating, and starting over; and 

• more confidence about the future. 

If you’re not sure where to start with receiving help, answer a few quick questions on our website to explore the right support option for you or chat with one of our friendly team members. 

Disability support through the NDIS 

Receiving disability support funding through the National Disability Insurance Scheme (NDIS) is another way you can advocate for and protect your child’s future.  

We’re proud to be a registered NDIS provider with over 80 local teams across WA, giving families the freedom to live life their way with dignity, connection, and control. 

If you’re new to the system, our First-time NDIS guide for WA families takes you through the basics. 

Advocating for your needs through the NDIS 

If you’re eligible for support, remember you have every right to receive disability support that feels consistent, respectful, and genuinely understanding. 

So you can get the best support, the NDIS encourages you to:  

• Explain your loved one’s real needs. 

Not just what support looks like on paper, but how it plays out day to day. 

• Attend planning meetings. 

Make sure your family’s voice is part of the conversation so the NDIS can get the full picture. 

Read more about how to prepare for these planning meetings in our blog, ‘Getting ready for your first NDIS planning meeting’. 

• Shape how support is delivered 

When it’s time to choose, make sure the services and people align with your values. 

Appealing a decision with the NDIS

Did you know that if your application for the NDIS is declined, you can request an appeal? 

You can ask for an internal review of the decision within three months of receiving your decision letter and advocate for any gaps that might have been missed. 

We’ve explained more about this process in our blog, ‘Declined for NDIS support? Exploring other disability services’. 

Carers as advocates – your wellbeing matters 

Advocating for better disability support while caring for someone you love is a lot of work. 

It’s a rewarding, yet challenging job. And when you’ve been doing it for years or are starting to feel emotionally or physically drained, the weight can build without you realising. 

We often hear carers say they feel: 

• tired of pushing; 

• worried about the future; and 

• unsure how long they can keep going at this pace. 

If this resonates, it’s important to remember that looking after your wellbeing will enable you to provide better care and advocacy for your loved one, for longer.  

In our blog, ‘Practical ways to prevent carer burnout’, we’ve put together six practical tips to help you reframe how rest and care show up in your own schedule. 

You deserve the best support 

Change doesn’t always happen quickly. But every conversation, every question, and every step toward better disability support matters. 

We want you to have the resources you need to create a future where your loved one is supported, understood, and cared for in a way that feels right – so you can feel that sense of reassurance too. 

When life feels complicated, our team is here to guide you through the options and help you understand what different levels of disability support could look like.  

If you’d like clarity on the next steps or want someone to talk through your situation with, get in touch with our team today.