Finding your voice: The importance of disability advocacy.

Advocacy is a powerful tool for supporting people with disability, offering a voice to help overcome barriers and ensure your rights are protected and upheld.

Whether you’re trying to access the NDIS, appeal an NDIS decision or access services, having an advocate can make a big difference to getting the best outcome for your needs.

Today we’ll shed light on what advocacy is, the role of an advocate and situations where an advocate may be able to assist.

We’ll also speak with disability advocate, Chithrani Palipana who dedicates her life to promoting inclusivity and advocating for the rights of people with disability.

What is a disability advocate?

A disability advocate is an individual who supports and represents the interests of people with disability. Advocates act as allies and put you at the forefront of decision making.

They work in partnership with you to ensure your rights are protected, your voice is heard and that you have access to the supports and services that suit your individual needs.

Advocates can provide information, guidance and representation to help you assert your rights, resolve disputes and navigate complex systems.

The roles of disability advocates.

1. Support and guidance.

Advocates can help you navigate complex systems like the NDIS, government services and community supports. They can also explain your rights and what you’re entitled to so you can make informed decisions.

2. Information and education.

Advocates are a valuable source of information, explaining complex policies, procedures and services in everyday language. They can help you access relevant information and empower you to advocate for yourself.

3. Representation.

Advocates represent and speak on behalf of people with disability in various settings, such as meetings, assessments, negotiations and appeals. They ensure your perspective and interests are effectively communicated and considered.

4. Empowerment and self-advocacy.

Advocates can help you learn self-advocacy skills. They encourage you to express your needs, preferences, and goals and provide tools to confidently speak for yourself.

5. Rights protection.

Advocates monitor and challenge instances of discrimination, abuse or neglect, ensuring that individuals’ rights are respected and upheld.

6. System change.

Disability advocates work toward broader systemic change by identifying and addressing barriers that prevent people with disability from fully participating in society. They advocate for inclusive policies, practices and laws to create more accessible and equitable communities.

7. Referrals and networks.

With extensive contacts and connections, disability advocates can connect you with a wide range of available support services and resources.

How advocates work: Chithrani’s story.

Chithrani Palipana is mother to Dr Dinesh Palipana OAM, 2021 QLD Australian of the Year and Leap in! Brand Ambassador. Dinesh was the first person with spinal cord injury to graduate as a doctor in Australia.

When Dinesh suffered a spinal injury and developed quadriplegia in a serious accident while still in medical school in 2010, Chithrani became an informal advocate and full-time carer for her beloved son.

“At the time, we did not know where to go, what to access, where to get information,” Chithrani said. “There was no one out there to give us guidance or support. We had no idea where to get a wheelchair, a permit for accessible car parking or what funding was available.”

“We spent more than three years trying to put things back together, exhausting all of our savings. I lost my job. My marriage fell apart. It was a long, hard journey to get the supports Dinesh needed but we learned a lot.”

Fast-forward 14 years and Chithrani is now helping other people with disability through her own experience, working as a Rehabilitation Counsellor (Vocational/disability) / Disability Advocate offering pro bono advocacy services.

Last year, Chithrani supported almost 100 individuals and families through a range of issues, including accessing the NDIS, appealing for more appropriate NDIS funds, overcoming barriers at work, conflict resolution and tribunal hearings.

“Advocacy is important because when you are in a difficult situation, you often don’t have a voice or understand your options. An advocate can step in and help you through the journey,” Chithrani says.

“I doubt I would understand what a person with spinal cord injury needed if it hadn’t affected our lives… the daily challenges, the importance of the right funding. Lived experience matters.”

When do you need an advocate?

An advocate can be beneficial in various situations.

Initial NDIS access: If your application for the NDIS is denied and you believe you meet the eligibility requirements.
Getting the right NDIS supports: If you’re unhappy with your plan, or don’t feel your supports are adequate, an advocate can help you through the review process.
Appeals and complaints: If you disagree with an NDIS decision, an advocate can guide you through an appeal or help you lodge a complaint. They can help you put your case forward and attend conferences or hearings.
Discrimination or unfair treatment: If you experience discrimination in employment, education or service provision, an advocate can help you understand your rights, navigate any complaints process and advocate for fair treatment.
Accessing support services: An advocate can explore and help you understand the available options. They can provide information about services, help evaluate those that align with your needs and support you with any applications.
Employment support: An advocate can offer guidance on disclosing disabilities, navigating job applications and interviews, and advocating for workplace accommodations that enable you to perform your job effectively.
Conflict resolution: For example if you have a conflict or issue with a service provider that you are unable to resolve yourself.

Chithrani explains that sometimes an NDIS access request is rejected due to a lack of understanding of a person’s needs or not enough of the right information.

“Advocacy can help bridge the gap between your needs and how the NDIS can support you. Sometimes it’s a case of explaining to the person what the NDIS wants to know and how to explain it. Other times, it’s about clearly demonstrating to the NDIS the challenges that a person faces because of their disability to ensure they get adequate support and funding.”

Having someone in your corner.

Chithrani says having someone in your corner who knows the system and processes can really take the pressure off.

“Being supported by a disability advocate when going into a plan meeting or NDIS appeal means there’s someone with a well rounded understanding of you, your needs and the situation to speak on your behalf,” Chithrani says.

“For example, in a plan meeting or tribunal hearing you may be asked questions that you don’t know how to answer or you may forget to include certain information which can affect the outcome. We can give answers that represent you in language aligned with NDIS guidelines.”

Having an advocate can be particularly helpful for people who are non-verbal, have psychosocial disability or mental health conditions or anyone who gets stressed dealing with authorities.

Top tip: Chithrani recommends getting a support coordinator included in your NDIS Plan if you’re seeking an advocate. That way, both professionals can work together for your benefit.

Tips for finding the right advocate:

Seek recommendations or referrals from people you trust
Consider their experience in the specific area of advocacy you require
Arrange an initial meeting to check that you’ll get on well and feel heard, understood and comfortable
Consider your personal preferences and any cultural or language considerations
Check their availability and accessibility
Understand if they offer a free (pro bono) service or if you will be charged for their services
Trust your instincts.

Chithrani suggests taking time to find the right advocate by getting to know them, asking questions and finding out how they can assist you.

“Make sure you’re comfortable with anyone who is in your space. It is your space. You have the right to work with someone you trust and who takes the time to understand what you need,” says Chithrani.

Top tip: Not all disability advocates can act in all situations. For example, if your issue is a legal one, you’ll need an advocate with legal experience.

Where to find a disability advocate.

National Disability Advocacy Program (NDAP) is for people with disability who are facing complex challenges.

AskIzzy is a website dedicated to helping people find independent disability advocacy providers in their area.

Administrative Appeals Tribunal (AAT) support. You may be able to get help from a disability advocate who acts as a support person. A support person is independent and their services are provided free of charge by NDIS Appeals.

In each state:

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