When her son was diagnosed with a speech delay disorder and began receiving NDIS-funded therapies, Rabia found herself navigating not only unfamiliar systems, but also the cultural silence that surrounded disability in her community.

“If I would have been in Pakistan, I can’t talk about this,” said Rabia.

“Everybody has their own concept of what disability is to them, it’s a stigma and especially from the community I am in, it’s like a taboo. We can’t talk about this.”

This silence makes it difficult for families like hers to speak openly, ask for help, or advocate for support.

Before becoming involved in The Rights Path Project, Rabia didn’t fully understand her rights or the role she could play in supporting others. As a Lived Experience Consultant for the project, she contributed her personal perspective and community insights to help shape culturally responsive, in-language resources about participants’ rights under the NDIS and how to advocate for services and supports.

“I didn’t know my rights. But after getting involved in this project, I got to know myself,” said Rabia.

“I identified myself. My skills, my hidden potential. I asked myself, “What can I do?” I can speak. I can share my opinion. I can raise awareness.”

Rabia learned how to navigate the NDIS, what to expect from providers, and how to raise concerns, and gained the confidence to speak up.

Since participating in the project, Rabia has become someone others turn to for support. She speaks to families from her community who are facing similar challenges, many of whom felt they had no one to talk to about their NDIS journey or their child’s diagnosis. Her openness has encouraged others to speak up, ask questions, and understand their rights.

“I can be trusted, and people are trusting me,” said Rabia.

“I learnt that our community needs us and what I have learnt in this project is that I can share it with my community. I can share knowledge; I can share my experience. I can share what I have learned. I can spread the word.”

Now the resources are available, Rabia sees this as a new beginning. She’s continuing to raise awareness and create safe spaces for others to talk about disability without shame.

• The resources we’ve created are a helpful guide for anyone facing similar issues.  

• The videos encourage people to speak up and highlight the importance of advocacy and self-advocacy in the NDIS system.  

• They empower individuals to understand their rights and the steps to take when problems arise.  

• Even if someone doesn’t have a support coordinator or can’t reach one, the simple five-step guide in the fact sheet will help them advocate for themselves.  

• It’s essential that these resources are available in community languages, so language barriers don’t stop people from understanding how to file a complaint.  

• The community education workshops will also be a great help for those who need additional support. 

Participating in The Rights Path project as a lived experience consultant helped Anh gain a better understanding of her own rights and the steps to take when facing issues with NDIS services. Her experience will also empower others in the community who are experiencing similar challenges.

Anh’s experience raising her concerns about NDIS supports and services

“According to my daughter’s [NDIS] plan, she was supposed to receive care every Monday. However, following a public holiday, she missed out on the service and was later issued an invoice for that day,” said Anh.

“When I reached out to the provider two weeks later, I couldn’t reach the support coordinator. I contacted the plan manager for help, who assisted me in drafting an email to complain about the overpayment.”

When Anh filed her first complaint, the provider initially claimed there was no proof of a cancellation due to the public holiday. Anh then provided the cancellation email she had sent, but the provider responded by stating that a two-week notice was required. Anh confirmed her cancellation email had met the required notice period. However, instead of addressing the issue, the provider changed the service day to Wednesday and sent a new invoice.

Despite her efforts, the provider did not resolve the issue, prompting Anh to file a second complaint and eventually switch to a different provider due to the lack of resolution.

How participating in The Rights Path project helped Anh understand her rights and the need to complain

Anh found that participating in the project helped her understand the importance of documentation in these situations.

“The steps for [making a complaint that] I learned in the project helped me understand how to complain. I knew what I could do to ensure I am not being overcharged,” said Anh.

“The workshops provided clear guidance on how to navigate such issues.”

Anh is now confident to advocate for herself.

How The Rights Path resources will help others

• The resources we’ve created are a helpful guide for anyone facing similar issues.
• The videos encourage people to speak up and highlight the importance of advocacy and self-advocacy in the NDIS system.
• They empower individuals to understand their rights and the steps to take when problems arise.
• Even if someone doesn’t have a support coordinator or can’t reach one, the simple five-step guide in the fact sheet will help them advocate for themselves.
• It’s essential that these resources are available in community languages so language barriers don’t stop people from understanding how to file a complaint.
• The community education workshops will also be a great help for those who need additional support.