Deafblind Self-Advocacy

We focus on self-advocacy, what it means, how and who to speak up to, what to say, and who can support you in the process. We will also talk about the NDIS and NDIA; their differences and how they help you as a Deafblind person. You’ll learn what to do if your NDIS plan isn’t right for you, who to contact for changes, and what to say so that you feel prepared. At times, questions can arise to do with the NDIS. Some answers will be provided in these videos. The aim of the following videos is to help you clarify your understanding and give you confidence. They contain simple steps to follow and examples. We hope you enjoy watching these videos. 

Common Barriers Part One

On this page you will find information that may be useful to you in facing the following issues:

Issue 1: You have recently been diagnosed with deafblindness.  Where to start accessing support and information? 

Issue 2:  There aren’t any deafblind inclusive support services in my area including Auslan interpreters, Comm guides and technology training.

Issue 3:  Community or public events are not accessible.

Issue 4:  Notification of emergency situations do not reach deafblind people.

Issue 5:  Environmental hazards. 

Issue 6:  My LAC doesn’t understand the complexities of deafblindness.

Issue 7:  Increased disconnection from family and community as deafblindness progresses.

Issue 1: You have recently been diagnosed with deafblindness.  Where to start accessing support and information:

A diagnosis of deafblindness may come as a surprise or be something you are expecting.  This can be a time of great change or uncertainty for many people.  You may need support to determine what services are available in your area and how to access them.  The links below are a good starting point.  

To learn more about living with deafblindness, use the services directory at Deafblind Information Australia. 

To find your nearest deafblind organisation to access local services information and support see: below this video for a link. 

Apply for the NDIS: see the link below this video 

Learn more about deafblindness through the deafblind information hub: see below the video for a link. 

Ask a deafblind consultant: see below the video for the link.

Issue 2:  There aren’t any deafblind inclusive support services in my area including Auslan interpreters, comm guides and technology training.

You have a right to expect support organisations and services to understand your needs, communication methods and supports as a deafblind person.  Understanding your rights and advocating for yourself are important in accessing inclusive services and you can develop these skills through this toolkit and online at Deafblind Information Australia.  See below this video for a link.

Organisations and government must take responsibility to learn how to provide deafblind inclusive and accessible supports.  Deafblind Australia and your state-based deafblind organisations can provide valuable deafblind awareness training.  See below this video for a link to contact Deafblind Australia.  

Figuring out what services to access and how to access them can be challenging.  A deafblind consultant is available to support you in this process: see below the video for a link.

Issue 3:  Community or public events are not accessible.

You can use your NDIS plan to book access services or assistive technology at community events.  Contact the event organiser to request Auslan interpreters who are able to work with deafblind people.  

You can share this ‘Interpreter Booking Checklist’ with your request: a link to the document is below the video. 

More information on using your NDIS plan is available at Deafblind Information Australia: see below this video for the link.

Applying for a Companion Card: this link will take you to the disability gateway page where you select your state which will lead you to a page with information including how to apply for a companion card in your area.  There is a link to the disability gateway below this video.

Common Barriers Part Two

On this page you will find information that may be useful to you in facing the following issues:

Issue 4:  Notifications of emergency situations do not reach deafblind people.

Across Australia deafblind community members may experience various natural disasters including bushfires, floods or severe weather.  Oftentimes, Deafblind individuals do not receive notifications or updates about these emergencies.  Being aware and prepared is crucial for staying safe. Deaf Nav has a series of Auslan videos with transcripts. Please see below the video for links.

Resources to assist you in preparing for emergencies in video format with Auslan interpretation and transcripts provided, are available from the National Auslan Communications for Emergencies.  Please see below this video for links.

You can create a safety plan on the Australian Red Cross ‘Get Prepared’ app.  You can download the app for Android and iOS by following the links below this video.  

Create a deafblind ID card to use in emergency situations.  We have made some templates you can personalise or contact Deafblind Australia to request an ID card be sent to you.

Issue 5: Environmental hazards.

You may experience hazards in your community that are a risk to your safety and mobility.  Deafblind individuals deserve access to a safe, hazard free community and to expect quick responses from council and organisations to fix issues and hazards.

Download the free ‘Snap Send Solve’ app to report community issues like trip hazards, street lighting or pavements.  The app lets you report directly to your local authority anywhere in Australia.  A link to download the ‘Snap Send Solve’ app is available below this video.

You can ask your local government to complete deafblind awareness training to better suite your needs. Contact Deafblind Australia to engage services and organisations in deafblind awareness training. The link to contact Deafblind Australia is available below this video.

Issue 6 My local area coordinator (LAC) does not understand the complexities of deafblindness.

Deafblind Australia has documents and resources to inform your LAC’s and planner about deafblindness.  An agenda is a list of things you wish to discuss in order, at your meeting. 

Giving your agenda to your LAC before the meeting will give them time to prepare any information you have requested or may need.   Bring support people to your meeting who do know your needs and can assist in communicating these and to provide emotional support during stressful process.   

Contact your support coordinator after meeting with your LAC.  It is their role to help you get the most out of your plan.  

If you feel that your LAC and planner still need additional information on deafblindness, you can request that Deafblind Australia your state deafblind organisation provide them with deafblind awareness training.  More information is provided in the links below this video.

Encourage your LAC to contact a Deafblind Consultant through Deafblind Australia if they need additional support to understand your deafblindness.

Issue 7: Increased disconnection from family and community as deafblindness progresses.

As deafblindness progresses, some people experience disconnection from friends, family and wider networks.  These tips have been suggested by members of Deafblind Australia’s Reference Group but may not be helpful for everyone due to your individual and unique experiences.

You can find and connect with a local peer network in the deafblind community by searching Deafblind Information Australia’s directory: see below this video for links.  

Seek professional support for grief and loss.  This may be something you can access by your NDIS plan or by visiting your GP and requesting a mental health care plan. Book comm guides and interpreters for family or social gatherings, seek funding through your NDIS plan.

If you would like additional support to navigate changes in your life as deafblindness progresses, you can contact Deafblind Australia: see below this video for links.

Through this video you may see the tech sliding with names of websites.  You will find all the links listed below this video that you will be able to click and go directly to the website.

Self-Advocacy: Knowing your rights

Commonwealth, Federal and State legislation makes sure that people with disabilities and the people who care for them have the same rights and access to opportunities as all other citizens in Australia. 

Laws and legislation use complicated language an include a lot of information that might seem overwhelming. Federal laws and laws listed by states can be found at Deafblind Information Australia. You are also protected by international law. This is called the Convention on the Rights of a person with disability or the CRPD. There is a link below to the CRPD and a link to an Auslan interpreted video with more information about the CRPD. 

The Australian Government has agreed to protect the human rights of people with disability through the CRPD. Recent research shows that Australia is in violations of many human rights and is not following the agreement within the CRPD. Many deaf bind people have experienced in the past or are now experiencing abuse, violence and neglect. There is a royal commission into these issues. We’ve included an Auslan captioned and voiced video below to explain more. You can reach out to DBA for assistance unmaking sure your experience is part of this royal commission.

Self Advocacy Tool-Kit: Advocating for Yourself

Deafblind people have many barriers. Self-advocacy means you know your rights and feel comfortable explaining them to others. Doing this takes practice and time to learn and to feel confident. Sometimes, even if you can explain your needs really well you still might have barriers. These are times when it’s important to use advocates or advocacy organizations like Deafblind Australia to help. 

Here are 5 steps to help you know how to advocate when you have a barrier. 

Step 1

What do you want? 

For example, you might need a CommGuide, Interpreter or Environmental Improvement.

Step 2

Who can give it to you? 

Organizations, local services, local or state government or education providers. 

Step 3

What do they need to hear?

Focus on the relevant impact and risks and offer a solution.

Step 4

Who do they need to hear from? 

YOU. Seek extra support with an advocate, a personal support system, or request Deafblind Consultant. Link below for Deafblind Consultant.

Step 5

How do they need to hear it? 

There may be steps you have to follow to make the request. For example, applying online. Meeting in person. Or using a specific form. 

Here are some examples of different barriers and how to use the 5 steps. 

EXAMPLE 1

Your NDIS plan does not include something you needs as a Deafblind person. You asked for a hearing aid with rechargeable batteries and the NDIA said no. 

Step 1: What do you want? 

Funding to buy hearing aids with rechargeable batteries. This is because the ones with small batteries that you need to replace are not a good match for a Deafblind person. 

Step 2: Who can give it to you? 

The NDIA. 

Step 3: What do they need to hear? 

IMPACT: You do not feel confident changing hearing aid batteries and are not confident going out because if your hearing aid batteries go flat you will be stuck with no hearing aids and will not be able to replace them. 

RISK: If the batteries run flat and you can’t swap them without support you might get stuck out in the community unable to communicate. 

SOLUTION: Funding rechargeable aids will remove these barriers and risks. 

Step 4: Who do they need to hear from? 

You. You might need an advocate, family member or friend to support you. 

Step 5: How do they need to hear it? 

In writing using the “Request for a Review” of a decision form submitted by email or by post.

EXAMPLE 2

The footpath outside your house is damaged and it is difficult for you to move around safely. 

Step 1: What do you want? 

The footpath to be fixed quickly. 

Step 2: Who can give it to you? 

Your local council. 

Step 3: What do they need to hear? 

IMPACT: You cannot leave the house alone and may miss important appointments. 

RISK: Risk of injury from falling over

SOLUTION: Fix the footpath as soon as possible. 

Step 4: Who do they need to hear from? 

They need to hear it from you so you can explain your situation and why it’s important. You might need an advocate to help you or a family member or friend to support you. 

Step 5: How do they need to hear it? 

The council might have a form on their website or a phone number you can use to report things that need fixing in your area. You could also use the app called Snap Send Solve to let the council know there is a problem. 

Glossary of Terms

Hi I am Joe, and I am going to unpack the difference between the NDIA and NDIS. 

NDIA stands for National Disability Insurance Agency. They are an organisation set up to provide support, information, and policy directions related to accessibility.

NDIS stands for National Disability Insurance Scheme. It is the system for which people with disabilities including deaf blind people have the right to access funds to pay for things like CommGuides, Interpreters, psychological services or home modifications that are related to your needs. 

The specifics of what funding you receive depends on your disability and your needs and won’t be the same for everyone. 

Barriers

I’d like to explain about the word barrier. This doesn’t always mean a physical thing that is standing in your way. A barrier occurs anytime someone does not have the access they need. The barrier could be lack of funds. lack of CommGuide or Interpreter support, or anything that means your needs are not being met. The types of barriers people experience depend on their circumstances and not all people with a disability experience the same barriers. 

Review

Now I would like to explain what is mean by an NDIA review. Let’s say for example that I receive a package of 100 thousand dollars for my first year on the NDIS. After some time, we will need to go back and look at the package to check that what I have been funded for matches my needs and goals. After this check I might find that my plan for the second year has less funds in it. It might be cut to 50 thousand dollars. If I don’t like the changes that have been made I can request that these decisions be reviewed. As a participant of the scheme I have a right to ask them to explain to me why they made the cuts to my plan if I feel like the new plan is not sufficient to cover the costs of the supports I need. to ask them to look back and explain their decision to me is what is meant by a review. 

Appeal

The AAT stands for administrative Appeals Tribunal. It works a little bit like a court. As I explained when talking about reviews, I have the right to not accept a decision made by the NDIA such as cuts. being made to my plans. If we cannot reach an agreement then I and the NDIA  both attend the tribunal. the AAT staff will, like in a court room, ,listen to both the client argument and the NDIU argument and will make a decision. For instance they might find they don’t agree with the cuts made by the NDIA and recommend my funding be restored to the previous level. 

Self-Advocacy

I want to explain about the term self-advocacy. This does not mean doing advocacy on your own. A deafblind person can ask for help advocating for their needs. This can come from a CommGuide, an interpreter, or any of the various advocacy organisations that exist and they can support you to advocate for your rights. For example, let’s say that I’m missing my buss all the time. Because of my limited vision I can’t hail the bus to stop so it keeps passing me by every day. In this case I need to advocate to the bus company and make them aware I’m having difficulties using their services and I may not be the only one having these issues. I need to explain to them that the bus needs to stop and let me know they are there so I can get on.  This is the type of thing we mean when we talk about self-advocacy. 

Emergency

I’d like to give an example of an emergency situation. Let’s say I, as a Deafblind person, am walking along one day and struck by a vehicle that doesn’t stop to help me. In this situation it’s absolutely critical that I get police, ambulance, or whatever assistance I need as soon as possible. Or let’s say my house is in the process of being robbed. This isn’t a situation where I can happily wait three or four days. It’s vital the police come straight away. Also in the event of a fire, we need the fire service and their response is not something that can be put off to a later time. An emergency is any situation where a fast response is needed to keep people safe. 

Text appears that reads: We also appreciate the support or Auslan Consultancy for the production in this tool-kit. 

NDIS Reviews and Appeals

People who are Deafblind experience daily barriers to community, communication and inclusion. Self-advocacy means you know your rights and feel comfortable and confident explaining them to others. Self-advocacy is a skill that takes practise and time to learn and feel confident using. Even with the best advocacy skills, you may still experience barriers. These are times when it is important to seek additional support from an advocate or advocacy organisation to provide general deafblind awareness to organisations and businesses. 

Here is a five step process to guide you in developing self-advocacy skills and confidence to advocate. 

Step 1. What do you want? Think of your accessibility needs, for example a CommGuide and interpreter or environmental improvements. Step 2. Who can give it to you? Organisations, local services, local or state government. Or education providers. Step 3. What do they need to hear? Focus on the relevant impact and risks and offer a solution. Step 4. Who do they need to hear from? You. The extra support asking advocate. Your personal support system. Or request a deaf blind consultant from Deaf Blind Information Australia at the link below. Step 5. How do they need to hear it? There may be steps you have to follow to make the request. For example, applying online. Meeting in person or using a specific form. 

NDIS Reviews and Appeals

If you are not happy with your NDIS plan, you have three months to ask for a review. First, speak to your LAC or Planner about your concerns.

You can request a review in writing or download an application from the NDIS website and send this through email or post. You do not have to use this form, but it may help you describe why you want a review of the decision.

When you ask for a review, explain why you think the decision is wrong. Plan your ideas before the meeting so you know how to communicate how the plan is not right for you.

Remember this must be done within 3 months. If you are happy with the outcome of this review, start using your plan.

If you aren’t happy with the decision, you have 28 days to apply by mail or online for an external review by the Administrative Appeals Tribunal or the AAT. The AAT can help you complete your application if you need help, contact details and link section is at the bottom of this page.

You don’t need to navigate the NDIS applications or reviews process alone. You can request a Deafblind consultant from Deafblind International Australia by following this link.

You can use the Self Advocacy Guide in this Toolkit to help plan your request. The link to the NDIS website is available below this video. Contact details for the Administrative Appeals Tribunal are available below this video.

Through this video, you may see the tech sliding with names of websites. You will find all the links listed below this video that you will be able to click and directly go to these websites.

Emergency Services

* DISCLAIMER: Please note that DBA is updating the contact and advice information. Please contact your next of kin in an emergency.

*Please note that Deaf Connect and Expression Australia have collaboratively decided to dissolve the Auslan Connections joint venture. Clients and the Deaf community can continue to book interpreters with either Deaf Connect or Expression Australia.

DBA’s Reference Group shared that many members were not confidently prepared for various emergency situations.  We want to provide one place where you can go to prepare and understand emergency situations. 

On this page you will find information about preparing for an emergency, making an emergency call, requesting interpreters during an emergency situation, how to access interpreters for private and public health appointments and how to access an interpreter for a police appointment or interview.

Preparing for an emergency 

A safety plan allows you to prepare for possible emergencies. Your safety plan is unique. We have created a document to help you prepare your safety plan. This document is listed below.

Making an emergency call 

Australia’s primary emergency call service number is 000 which can be dialled from any fixed or mobile phone, pay phones and certain Voice Over Internet Protocol or VoIP services.   You can still receive emergency help if it is not safe to speak or if you cannot speak.

• When using Internet relay, ask for 000. 
• When using captioned relay ask for 000.  
• For SMS relay text 0423 677 767 and include 000 in your first message.
• Ordinary phone dial one 800-5557 727 and ask for 000
• For TTY dial 106 

All calls to emergency numbers whether from fixed, mobile, payphone or VoIP services are free of charge.  For more information about calling services, visit the 000 website by following the link at the end of this page.

Requesting an interpreter in an emergency situation 

A service: police, hospital etc can book an interpreter through their regular agency, face to face or using VRI.  Auslan Connections have an after hours emergency number a service to call outside of business hours. 

Please note that Deaf Connect and Expression Australia have collaboratively decided to dissolve the Auslan Connections joint venture. Clients and the Deaf community can continue to book interpreters with either Deaf Connect or Expression Australia. Link: 

For Queensland and the NT please contact 0455 068 500 via call or SMS.

For NSW and the ACT please contact 0412 422059 via call or SMS.

For Victoria and Tasmania please contact 0394731174 for voice or NRS calls or if in Victoria, you can also contact Echo Interpreting after hours on 0449259153 via SMS.

Health appointments 

You will find a link to a video at the end of this page that you can show your healthcare workers if they need support to understand your rights to access.

Public health appointments 

If you have an appointment with a public hospital they are responsible to pay for an Auslan interpreter for you as they receive government funds for this.

Private health appointments

If you have an appointment with a private health care provider such as a GP, dentist, physio or a private hospital, you use your NDIS plan to pay for an Australian interpreter. You can book with any Australian agency you like. NABS will use your NDIS plan to pay for the interpreter it is not free anymore

If you don’t have NABS because you are over 65 years of age, are aboriginal or Torres Strait Islander, are not an Australian citizen or are not eligible, then ABS will arrange a free Auslan interpreter for you.

Over 65s with a My Aged Care package can use Auslan Connections to access these services and appointments.

Police appointment 

If the police want to interview you, they are responsible to pay for an Auslan interpreter for you as they receive government funds for this.  You can show the following statement to self-advocate if you are facing barriers to access. 

‘You are required to provide me with an Auslan interpreter.  As a Deafblind person, my access rights are protected by the following:

• Charter of Human Rights and Responsibilities Act 2006

• Criminal Procedure Act 2009, as highlighted in Section 33

• Equal Opportunities Act 2012, includes a ‘positive duty obligation’ which means that departments and agencies need to take proactive and reasonable steps to address causes of discrimination, regardless of whether a complaint has been made or not.

• Victorian Government Policy Using Interpreting Services.

Auslan Interpreters can be booked through VITS and Auslan Connections.

Through this video, you may have seen the text sliding with names of websites.  You will find all the links listed below this video that you will be able to click and go directly to those websites.