Self-advocacy for people with disability

Key Points:

• Everyone has the right to have a say in matters that are important to them and to have their voice heard
• People with disabilities often aren’t given enough space to self-advocate and can have decisions made for them 
• When making a complaint, it is helpful to keep track of the process by note-taking and making lists

Self-advocacy is speaking up for your rights, needs and things that are important to you.

Disability Advocate at Aged and Disability Advocacy Australia (ADA Australia), Ben Shaw, said self-advocacy can help get your voice heard in matters that affect your life.

“The statistics show people with disabilities’ voices tend to be ignored and their lives and decisions are often controlled by others,” he says.

“Even when you’re talking about people with diminished capacity or guardians in order, people with disabilities still have a right to express their views and wishes.” 

You may need to use self-advocacy in life to get what you are entitled to, to have your say and maintain a good quality of life.

These areas could include:

• Accessing disability support or care services
• Dealing with general services such as your bank, telephone company or Centrelink
• Getting support through the National Disability Insurance Scheme (NDIS)
• Interacting with your landlord or real estate agent

But what does self-advocacy look like?

Accessing what you’re entitled to

You have the right to access services you need in everyday life. 

Self-advocacy is a tool that allows you to maintain access to these services.

Self-advocacy can look like:

• Getting clear information that you understand about services and choosing which ones to access
• Having your needs and concerns heard and responded to
• Ensuring you have respectful interactions with staff when using everyday facilities and services

But being confident to speak up for yourself isn’t always easy. It can take time and often takes planning, patience and sometimes persistence. 

Self-advocacy is a skill you can practice, but it is always handy to know who else can help you be your own advocate. 

Who do I turn to?

Making decisions and getting problems solved can be complicated and overwhelming, so it is a good idea to talk it out before you put any plan into action.

Maybe you have relatives or close friends who help you make decisions and solve everyday issues, you might have a formal decision-maker.

Alternatively, you may choose to access a disability advocate.

Disability advocates can act as a voice for you by speaking, acting or writing on behalf of the interests of a person or group in order to protect, promote and defend their welfare or justice.

An advocate can also enable and support you by:

• Helping you understand your rights
• Listening to your concerns
• Discussing your options for raising that concern
• Assisting with negotiating changes to your NDIS plan
• Giving advice and support when dealing with service providers

You can read more about disability advocates in our article: ‘The basics of disability advocacy’.

Even if you have completed an Enduring Power of Attorney document and your attorneysare now your formal decision-makers you have the right to make your wishes known.

Attorneys still need to consider your views when making decisions for you so it’s important you speak with them and express your wants and needs.

No matter which trusted person you consult, asking for their advice on what you should do is the first step to ensuring you can advocate for yourself in the best way possible.

How to put self-advocacy into play

Self-advocacy sounds simple, but actually applying it in real life can have its challenges. 

When trying to get a problem solved or have your voice heard, ADA Australia recommends making lists along the way to help keep your mind clear and on track.

Sometimes there are many parts to the problem and being able to write them down and refer back to them will help you feel confident in advocating for what you want.

After talking it out with the people you trust or your decision-makers, you can follow these steps to get results.

Identifying what’s most important

Making a list of topics, problems or queries you have before making a phone call or going into a meeting can be helpful.

Note down what is most important to you and what you could do as a first step.

Once you have your list, you can think about what potential outcomes could happen for each one. How might things be resolved?

At this time, you can look into what you are entitled to and your rights to help identify some potential outcomes for the issues on your list. 

For example, you might want to know how to make a complaint about your disability services or find out what an educational institution must offer to accommodate your needs. 

If there are many parts to the problem, work on one thing at a time.

Making contact 

When you do decide to make a call, it is a good idea to have a trusted person with you to help listen in, take notes and unpack the conversation after the call. By using the speakerphone, both of you can hear what the other person is saying.

Once you’ve called and someone answers the phone, you should ask to speak to a manager or someone who handles complaints. 

During the phone call you should:

• Write down the names and positions of the people you speak to so you, your decision-maker or advocate can call back and speak to them
• Make notes of what was discussed, what will happen next, and when
• Be clear about what you would like them to do to fix the problem and what final outcome are you hoping for

Unfortunately, you may not be able to speak to the right person immediately, but don’t be discouraged. This can be frustrating, but it’s important to stay calm and polite to whoever you talk with on the phone and leave a message for the appropriate person to call you back. 

Be patient but persistent and call back again if no one reaches out to you in the following few days.

If you feel you are not making any progress on the phone, you can then ask to organise a meeting with them to take the issue further.

Organising a meeting

If your issue can’t be solved over the phone or more time is needed to fix the problem, it might be best to meet face-to-face. 

Just like a phone call, taking notes during the meeting is a good way for you to keep track of what was discussed in case your issue needs to be taken further. 

 A trusted person can also help with the discussion or talk about it with you after the meeting.

No resolution – what now?

You might need to take your issue further with the company or organisation if the changes and actions you have agreed to have not been done. 

This is where having patience and persistence is key to having your problem solved.

To take it further, call again and explain that you are not happy with the progress. 

You can ask for an update or you can speak with someone else about the issue.

Being your own advocate can be difficult. But when it comes to matters that are important to you and impact your quality of life, knowing how to raise issues and voice your preferences is essential.

How have you been your own advocate? Let us know in the comments below!

Related content:
The basics of disability advocacy
Education rights for students with disability
Janelle’s story: campaigning for change