Why an accurate representation of differences in our world matters, especially to people living with disability.

If you’re a white, middle-class male or female living without disability, you won’t need to look far to find someone you can relate to in the media. People just like you are on TV, in movies and can be seen on the pages of catalogues and magazines. 

Yet, if you’re living with a communication difficulty, or any type of disability for that matter, you’d be hard pressed to find relatable characters on your favourite media outlet. And when you consider that 4.4 million people in Australia live with disability, there’s a huge gap. That’s 18% of our population, or 1 in 6 people, unrepresented. It’s definitely time for a change.

Media is a powerful creator of perceptions. And it can also be used to create the cultural change that people living with disability would love to see. 

What happens when perceptions create your reality?

Our very own Communication Access Consultant, Margie Charlesworth, lives with Cerebral Palsy and has a communication difficulty. She uses her natural speech to communicate and also uses AAC when creating videos or presenting at conferences and to businesses looking to increase their communication accessibility. She is one of the smartest, funniest, most driven people you will ever meet and a great work mate to everyone at Two Way Street. And yet, Margie faces all kinds of perceptions around her ability to communicate. People STILL finish her sentences for her ‘to help’. And she goes from being respected for her knowledge and experience one minute, to being infantised and called a ‘good girl’ the next. 

In one of her ‘Street Talk’ moments, Margie explained how it feels to have people finish her sentences. “Finishing my sentences implies many things. It implies that the person who I am communicating with can read my mind, or that I can’t communicate my own messages. It also implies that I have difficulty expressing myself or trouble figuring out how to say it myself. And finally, it implies that people would rather not listen to my voice…” 

Imagine if Margie’s experiences were depicted somewhat realistically in the media! Those assumptions of Margie not being able to get her message across, or not being mature due to her communication difficulty wouldn’t exist. A person’s disability is an important part of their identity and is something we would love to see normalised in media representation.

This is what happens when someone dares to challenge the ‘norm’.

We’ve seen Target Australia using a model in a wheelchair to advertise kids clothing. Was that the first time a child in a wheelchair rolling through Target saw someone like them on an in-store advertisement? Potentially, yes!

We’ve just seen Disney release a remake of The Little Mermaid featuring a non-caucasion Ariel played by African American actress and singer, Halle Bailey. Reactions from little girls seeing their all-time favourite mermaid as someone they can relate to, again maybe for the first time, made the internet explode.

Our team was just as excited to see Val Kilmer using AAC in the Top Gun 2022 sequel, Maverick. In the movie, Iceman’s battle with throat cancer rendered him unable to speak without causing pain (emanating a little of what was going on for Val Kilmer in real life). He is seen typing sentences and pointing to his screen to get his message across. 

It’s this type of representation that needs to be included in mainstream media more. The every-day lives of people, all people, as valued members of society. This is why inclusion is important and representation matters. 

The many ways we can achieve representation.

Representation can also be achieved through communication modes. We have all become very familiar with the sign language interpreters during community announcements and emergency services briefings. Imagine if other modes of communication were as prevalent. Imagine if people who use modes other than mouth speech to communicate, could see their mode of communication used in advertising, signage and information media. 

We work with a range of agencies to create signage that is not only useful for people who need the symbols to communicate, but also represent this mode of communication within the community. Our playground communication boards are a great example. We’ve also been busy creating beautiful products, like our AAC cushion covers, to ensure that symbolic communication is seen and valued around the home. And we have more to come, so if you haven’t already, join us over on Facebook and LinkedIn to stay up to date.

We’re strong believers in that world where communication brings autonomy, belonging, connection and opportunity for everyone. But we still have a long way to go…

If you are a business or organisation and would like some representation at your site, online or within your advertising, give us a call on 0434 266 237.

Do you have a communication difficulty? Are you comfortable using AAC? If you answered yes to both of those questions, then we’d love you to join us on our mission. Get in touch with Two Way Street to find out more about employment opportunities. Email [email protected] and tell us a little about yourself.

A program that builds the capacity of children with complex communication needs and their key communication partners to have conversations that will improve their emotional well-being and self-advocacy skills.

Presented by Margie Charlesworth and Janelle Sampson at the AGOSCI National Conference in Hobart on September 4-6, 2022.

Abstract:

The ‘Talking About Important Stuff’ project aims to help children with complex communication needs (CCN) and  their parents talk about important topics such as health, hopes, worries, fears and the harder subjects such as death and loss. 

The program will target early development of skills such as emotional development, well-being, and self-advocacy with a particular focus (as a pilot program) on young children and their parents. At completion of  the  project, a free online training program will be available that includes video lessons, real stories, examples and practice activities so that parents can share and teach their children how to  talk about stuff. The training program will support opportunities for children  and their parents to  learn and practice vocabulary, skills, and habits. We also hope to build on their attitudes and insights into the uniqueness and autonomy of their children.

It is important to acknowledge that this project is not about doing or expecting anything extra than the natural conversations that occur for parents and their children who do not have CCN. We simply aim to ensure that children with CCN do not miss out on this valuable learning and connection with their parents and/or people. 

This presentation  will share the progress of the project to date including a literature review and input from the project advisory committee and content  contributors, many of whom have CCN, or are  parents of children with CCN. This information will make up the key messages to be presented in the online program. 

Creating bespoke services for people with CCN by design rather than the NDIS price guide.

Presented by Janelle Sampson at the AGOSCI National Conference in Hobart on September 4-6, 2022.

Abstract:

As providers in the disability space and in particular, augmentative and alternative communication (AAC), we know there is no magic bullet. We also know that 1:1 therapy is only part of the answer, and often the more meaningful outcomes are achieved outside of therapy sessions where  motivation and engagement is much higher. The NDIS however has structured services so that the 1:1 becomes the standard and most sought after service for therapeutic intervention. In many places, we are frequently finding that demand outweighs supply for individualised therapy, particularly when it comes to those with knowledge and experience in AAC. We are left with long wait lists for individualised services and difficulty finding funding or justifying the costs for  innovative programs that may not easily fit  within the square (or price guide).

 
At Two Way Street (TWS), we have been negotiating the NDIS (formerly Better Start and HCWA) as funding for private services for 10 years. During this time, we’ve always had our eyes on the prize that is the bigger picture beyond 1:1 services. It has taken time, patience, dedication, hard work and financial risk on many occasions to expand our services beyond just individual therapy sessions and we are still only part of the way there. 

In this presentation, the TWS team will share the  milestones and challenges we’ve encountered on our way toward our BHAG (Big Hairy Audacious Goal) for the business that includes individual services alongside capacity building and community development, while maintaining a niche focus on people with CCN at the heart.  

Recent changes to the National Disability Insurance Scheme (NDIS) are aiming to make things easier for participants. With these changes, come differences to the systems we’re all accustomed to. It’s important to be aware of how these changes may affect you and what you can do to be prepared. 

As we move towards longer plan duration and fewer meetings with the NDIA, you will notice new terminology and processes regarding your plan. 

What has changed with the 2022 NDIS legislation amendments

What was previously known as a ‘plan review’ will now be called a ‘plan reassessment’. Your review date will remain as-is. To ensure participants aren’t left without services, all plans that reach their reassessment date without a reassessment being completed will be automatically extended by 12 months.

You will continue to receive Participant Check-In calls from the NDIA to discuss your wellbeing, your goals and the support you need. These calls will determine whether you need:

• A new plan with the same supports
• A new plan with minor changes to your current supports
• A full plan reassessment

While likely to be towards the end of your plan duration, we’ve heard that the Participant Check-In call can happen at any time, and possibly with very little notice. This highlights the need to be prepared, with your goals and budget in mind.

You can now request a ‘plan variation’ at any time. This means, in some circumstances, you can make changes to your plan without needing to replace the entire current plan. The aim here is to speed up the process for accessing new supports. 

You can read the full information shared by the NDIS on 30 June 2022. This is how the NDIS has outlined the process for changing your plan.

Our recommendations in preparation for your participant check-in

Here are some of our recommendations to ensure you’re prepared and won’t need to wait for access to new supports: 

• Schedule some time with your Speech Pathologist to discuss communication progress. Talk through your goals and your Speechie can provide advice on which supports might suit your development best. We can also prepare a letter of recommendation to support your requests if needed. 
• Have the Two Way Street Resources Price List on hand so you’re prepared to share the costs of any supports you may need
• Consider upskilling yourself or anyone in your support network with online learning from Two Way Street. Plan funding covers online learning costs to allow for ‘reasonable and necessary support’ to help you participate in the community
• Keep a running list on your phone or on the fridge with ideas, challenges or funding requests so that you are ready if you receive a Check-In call with short notice. Our team will also flag ideas as they come up during our sessions. Download the Participant Check-In List from Two Way Street to help you prepare.

How can we fund services and resources from Two Way Street?

The work we do helps people meet their daily communication needs, and therefore, funding for most Two Way Street services comes from ‘Capacity Building Supports’ and funding for communication resources may come from the ‘Core Supports’ part of your plan. We recommend discussing which Support Budget to use to claim for services with your Support Coordinator, Plan Manager or directly with the NDIS.

Key points to remember:

• The NDIA has 21 days to respond to a request for variation or reassessment
• It is a requirement that every variation to an NDIS plan is prepared with the participant – no changes can be made without you
• When your plan is within 7 days of its reassessment date, it is automatically extended for another 365 days
• The participant check-in process will continue to focus on meaningful conversation with participants and will be a key indicator as to how your plan will change in the future

It can be frustrating when things change and just knowing where to look for the right information can be half the battle. We hope this article has helped with your next steps to ensure successful changes to your plan at your next variation or reassessment.

We’re here to be your teacher, your ally and your cheer squad – even for the maze that is the NDIS. Please reach out if you need any further information on accessing the resources and services you need from us.

We share and we listen. It’s a Two Way Street.

In 2020, Two Way Street client Reagan started a small courier business. Affectionately known as ‘Ray’ amongst friends and family, Reagan’s business was cleverly named ‘DeliveRay’. Reagan is a fun-loving young man who is a big fan of long walks, chilling out watching YouTube and visiting the RSPCA with his Day Options program. Reagan communicates using body language, vocalisations, some key word sign and the Proloquo2Go application on an iPad. Proloquo2Go is a symbol based Augmentative and Alternative Communication (AAC) app for  iOS devices. You can find out more about Proloquo2Go via the Assistiveware website here. 

The idea for Reagan’s business started when Reagan’s family heard about the Community Living Project (CLP). A family friend had recently started a micro enterprise business with support from CLP. Reagan, his family, a team of volunteers and the Community Living Project met, created goals and a business plan. From there, a board member gave the project to his students, using their design brief to create a business logo. Following this, the family hired Henry, a Personal Assistant (PA). Henry went shopping for a uniform with Reagan and had an embroidery studio sew the logo on their shirts. Reagan’s mum created a flyer and visual supports for Reagan to assist with his new routine. Reagan’s long-term support worker Indianna also assisted in this process.

Reagan and his PA deliver goods every Friday to local businesses. This started with a hot cross bun delivery to a workplace and expanded from there. Reagan communicates using his iPad with Proloquo2Go, to interact with the community and form relationships with clients. Reagan greets staff/customers, introduces Henry (PA) and himself and shares information about DeliveRay’s Services by means of words and messages stored on his communication device. The flow on effect of this, has meant Reagan now greets people with greater independence during social outings. Henry has reported that people have been in awe of Reagan’s use of AAC and how positive it has been in sharing other forms of communication with people. Reagan recently commented that working with support worker Henry makes him feel “happy” and that his favourite part is saying “good morning” to his customers.

Reagan’s mum Chrissa and dad Garry recently shared that “Reagan is now at the stage where he eagerly gets up on a Friday, with a sense of purpose, puts on his uniform, then checks his morning schedule and marks off what he needs for work.  His PA reports back how super positive Reagan is during his interactions with the community and how proficient he is becoming using Proloquo2Go. As Reagan delivers on a Friday, every afternoon ends with Reagan and Henry having lunch together…usually at a pub. We love that Reagan and Henry have built a strong relationship and work well as a team and Reagan has work goals, creating a positive place in our community. Henry has also demonstrated a strong willingness to learn how to use Proloquo2Go and support Reagan”.

In 2021, Reagan and his family relocated meaning DeliveRay is still operating but on a smaller scale. Reagan and his team are now exploring new opportunities for his business. Well done to Reagan and his fantastic team, you are paving the way for people who use AAC in our community! 

It is great to see that more community places are coming on board with AAC and accessible communication. Maybe you’ve seen some of those cool communication boards in your local playground like the one below that we developed for the City of Playford Fremont Park Playground, in South Australia. Don’t forget though that Communication is a Two Way Street. A playground board is a wonderful tool for accessibility, but it’s only good if it gets used. Otherwise it’s just a nice decoration. We decided to put together some extra information and tips to make playground boards even better! What are they?

• An activity (ie. playground) specific communication board. The playground board has been designed to include a range of words and messages that are ‘predictable’ in a playground setting.
• A representation of the way that some people in our world communicate. This shows that those who created the playground acknowledge and respect this form of communication. It also creates awareness of this form of communication and may prompt people to learn more about the use of symbol-based communication boards.
• An added prop to enhance interaction for others who might also need it, such as young toddlers.

Who are they for?

• Playground boards were designed to be used by a child/person who is not able to successfully communicate their message with speech. This might be someone with a communication disability, a small child or someone who does not speak the same language as their peers.

• Playground boards can also be used by anyone at the playground and can be part of the game or just a different way to say things.

How to use them: The idea of the boards is that a child/person might point to the symbols to ask for, talk about, or direct activities. Below are some examples of the kinds of things you could say by pointing to the symbols on the playground board. Then their friend or parent, could use the symbols to answer them or take a turn about something else. It’s just like talking with symbols. An important note is that if you do have verbal speech, you can still talk while pointing to the symbols. Using the symbols just helps to get the message across clearly, or can be an alternative to speech if someone has a communication disability. If your child can’t independently go over to the board and point to the symbols, you might like to try some of these ideas:

• Point to (and/or read out) the messages and ask them to tell you ‘yes’ or ‘no’ when you get to the one they want to say. After they choose one, ask if they are done or want to add another word, otherwise you might only get half of the message.
• To speed things up, you might point to a column at a time first, then the individual messages. Watch this video to learn more about scanning the communication board.
• Maybe it would help if you take a photo of the board so that you can carry it around with you at the playground. That way you have it handy all of the time.
• If you are going back again, then print a copy of the photo, or download a copy of the playground board from the playground website if it’s available.
• If your child uses their own communication book or device, you could add some of the vocabulary from this board if you don’t already have it, or even make a page for this playground if you visit regularly. This is a great option because then you can talk about the playground before and after you go there too! It’s always great to tell others about the fun you’ve had or what you’re going to do first when you get there.

Extra Tips:

• Use the board yourself to talk to your child.  Doing this will help them learn how it can be used for lots of different messages (see examples below). It also shows them that it’s a good way to talk about things and to help them learn what all of those symbols mean.
• Don’t make them use the board if you already know what they are saying. This board is designed to enhance communication, not make them tell you something you already know.
• Encourage other children to use it with your child. There is nothing more motivating than seeing other children valuing and using something that you need to use. Your child will likely want to copy the messages they see others saying, or at least feel like they are not the only one using this board.
• The other benefit of encouraging other children to use the board is that they will always come up with more interesting messages. Children are not only good models for physical activity, but also for fun and interesting things to say.
• If your child is just beginning to use communication symbols, just show them 1 or 2 word messages rather than having to point to all of the words in a sentence.

Example messages: The playground board has a range of words and messages so that your child can say some of the predictable things they may be thinking when they are at the playground. Below are some examples of things they might be able to say or that you could show them how to say. Interaction is not just about asking for something. Lots of times children can do that just by pointing to the place in the playground. This board also gives them the opportunity to say other types of messages such as those listed below in orange.  Under each message type, are some example messages. The blue text shows words that you might find on a playground board such as the one in the photograph. We’ve also created 2 levels (Beginner and More Advanced) depending on the complexity of language you need to use.

Beginner (point to 1 or both of the symbols for the words in blue) then just say the other words.	More advanced You can show them how to combine words on the board. (point to the symbols for the words in blue) then just say the other words.
Talk about what they did or want to do
I bounced on the trampoline	I bounced on the trampoline
I want to go on the slide	I want to go on the slide
We had a BBQ.	We (I/me and you) had a BBQ.
Can you play the music	Can you play the music
Ask a parent or friend to watch them
I (me) can do it (watch me)	I can do it.
Can you see me? (Look! )	Can you see me? (Look!)
Let’s go basketball.	Let’s (you, me) go basketball.
I want you to look/(see).	I want you to look/(see).
Ask a question about something
Where is the slide?	Where is the slide?
What do I do on this?	What do I do on this?
Uh-oh. I don’t know how to climb up.	Uh-oh. I don’t know how to climb up.
Can you help?	Can you help?

Direct others
Can you bounce me?	Can you bounce me?
Stop the swing. I don’t like it.	Stop the swing. I don’t like it.
Can you help me go to the pond?	Can you help me go to the pond?
Can you push me (go) fast.	Can you push me (go) fast.
Tell you what they think
I like it. It’s fun.	I like it. It’s fun.
I don’t like (it) the trampoline. It’s scary.	I don’t like (it) the trampoline. It’s scary.
The music is too loud. I don’t like it.	The music is too loud. I don’t like it. Stop.
Enhance the activity
Go faster	Go faster
More climbing	More climbing
My turn again (more)	My (me)  turn again (more)
Stop. Go. Stop. Go.	Stop. Go. Stop. Go.
Interact with others
Do you want a turn?	Do you want a turn?
I’ll help you.	I’ll help you.
Let’s play.	Let’s (You me) play.
Where are you going?	Where are you going?
Talk about problems
Uh-oh. The boy fell over. (point to boy).	Uh-oh. The boy fell (fall) over. (point to boy).
I’m not finished. I don’t want to go.	I’m not finished. I don’t want to go.
I’m tired. Something’s wrong. Rest.	I’m tired. Something’s wrong. I want a rest/break.

And many more…. Are there any other messages that you can think of? Please remember these are just example messages and examples of the symbols you can use to say them. It’s important to use messages that are meaningful and useful to your own situation.

Make sure it’s not all work, no play!

So that everyone can participate, we’ve made an aided language display to go with our now most frequent daily activity. You can download it for free at the end of this post.

There are already lots of visual supports available for the sequence of hand washing, and we’ve been using the World Health Organisation’s How To HandWash Poster but many people are adapting this. It’s impossible to list all of the options here so pick your favourite or type ‘hand washing poster’ into your browser and find one that best suits your needs. 

Watch this video for the washing hands procedure in full.

Our aided language display is designed to go alongside a hand washing poster so that you can talk about it before, after and during the process. We’ve added some song choice buttons so that you can opt to sing Happy Birthday or add in a couple of your own favourite songs before you laminate the board. 

Some example phrases might be:

Your turn / My turn to wash

Uh-oh – do it again

Uh-oh – slow down. Wash the germs away.

Uh-oh. More soap.

Great washing. Time to dry.

Not clean yet. Keep going.

Let’s wash and sing Happy Birthday (or insert different song).

We recommend laminating the board and implementing routine cleaning processes as well when using the board. It might seem easier not to have one that you have to keep clean, but it’s only easier if you can speak and understand spoken language!

Click here to download our free washing your hands aided language display

We also recommend reading our Talking to kids about COVID-19 resource and blog post.

“Kids worry more when they’re kept in the dark”

Rachel Ehmke, Child Mind Institute

This blog post was written in March 2020.

With the outbreak and ongoing uncertainty of the Coronavirus/COVID-19, we feel it is important to provide resources and ideas to ensure those who have communication challenges also get the information they need.

Please download our aided language display (available at the end of this article) designed specifically to support these conversations. Please note that this is a general resource and may need to be personalised or modified to suit your child/person’s vocabulary and/or layout of their system. You may need to reduce the number of items, program the vocabulary onto their device, or use partner assisted scanning rather than pointing. Please talk to your speech pathologist or AAC specialist if you have questions in relation to this process. 

Give the facts: 

The recommendations from experts is to buffer children from the ongoing news feed about Coronavirus, but it’s also important to give them the facts at a level that suits their age and understanding. 

With the changing face of the virus, we can’t make a display that covers all of the facts. We suggest that you stay updated with credible news sites and use your child/person’s system to talk about additional facts that are not on our display. For example, this might be a good time to explore countries of the world, and talk about them. If you don’t have them, maybe add them to your system or onto the places list if using PODD.

 

Talk about what you can do:

“ Teaching kids what they can do to keep themselves and others safe is a positive way to make them feel empowered”

ABC News

We’ve provided vocabulary to talk about the virus but more importantly, the recommendation from experts is to talk to your children about what you are doing to stay safe.

For example (words in bold are what you would model on your AAC system whilst speaking the whole phrase):

• You and me (we) wash hands
• Stay away from sick people
• Try not to touch our face 
• Stay home
• You and me (we) have supplies if we need to stay home
• Go to doctor if you and me (we) get sick
• Doctors making medicine for sick people soon

 

Check in and keep talking

 Take an opportunity of time to talk about the virus with your child/person who uses AAC. By using the display provided and also their own system, you can help to show them the words they might need to use to ask questions or tell you things that they already know about it. 

You might also model to them questions they might be thinking about.

For example:

• What is COVID-19?
• Who gets sick?
• How do you get sick/COVID-19?
• What can we do?
• What about (person)? – If you think they might be worried about others. 
• What if you and me (we) get sick?

It’s not something you need to talk about constantly, but it is important to update when needed or check in occasionally. Remember, the intention is not to scare your child/person into panic, but it is to acknowledge that they are likely hearing people talk about this virus. Maybe on the radio, people at school (students or staff), or within your home. Just because you are not talking to them, it doesn’t mean they are not hearing things. The power and control for them (and for all of us) is in asking questions and talking about it.

Through conversation we learn more and gain the information we need to feel in control. 

Download our free COVID-19 aided language display

There are 2 pages to the ALD as it is intended to be a double-sided board. Printing each page and laminating them together is the most robust method for regular use.

Suggestions and information in this blog post are based on the following website information:

• https://childmind.org/article/talking-to-kids-about-the-coronavirus/
• https://www.abc.net.au/news/2020-03-04/how-to-talk-to-children-about-coronavirus/12020324