“Not many people know that I can understand what they say; sometimes it is beyond their belief.” Maison, a fifteen year old boy with complex communication needs.
You’re a vibrant, curious and smart teenager but you also have a brain injury that prevents you from speaking your thoughts, emotions and needs. Maison lives this reality daily, not ideal for a young man with a lot to say.
Being a fifteen year old is challenging enough but couple that with not being heard and things can get complicated.
For many people like Maison, who have Complex Communication Needs (CCN), the experience is frustrating and it can also lead to social isolation.
However, Augmentative and Alternative Communication (AAC) is giving people like Maison a voice. It’s a term used to describe all aided or unaided communication outside of natural speech and includes gestures, sign language, pictures, speech generating devices and now, more frequently, smart devices and apps.
When I first met Maison, he was using a spelling board to communicate. We were keen to show him how newer technology like smart tablets and apps could also be used to help him connect with others. At the Independent Living Centre NSW we are all about joining the dots for people, showing them how devices can transform their lives. People can visit our information centre or they can visit our website to learn more about the wide range of options that are available.
Increasingly, as we work with our clients, we are seeing a larger need to learn more about smart devices and apps, and the potential transformative impact these tools can have for many people living with a disability.
Currently in Australia, around 13,000 people with CCN use smart phones, tablets, or specialised Speech Generating Devices, to get their message across and we’d like to increase that statistic. With technology changing so fast, we also want to ensure that the digital divide does not become another issue people living with a disability have to deal with.
Last year, through a Social Innovation Grant from the Telstra Foundation, the Independent Living Centre NSW piloted a project to raise awareness of how technology could support people living with CNN. We ran nine local and regional workshops in NSW, conducted private consultations, and provided assistance over-the-phone to more than 200 people with complex communication needs, their carers, and health professionals. The pilot also enabled us to develop online resources, which are available on: www.ilcnsw.asn.au.
After the success of the pilot project the Telstra Foundation is now working with us to scale our program nationally. We are taking our workshops to every state and territory in Australia; working with regional organisations to help us connect to members of the community who like to learn more.
In my work, nothing replaces the moment when someone accesses a new tool or app that enables them to connect with their family, friends, and the world they live in. We see this everyday – even for people who may only be able to move their eyes, there is technology that can help them to communicate. It can be profoundly life-changing. When Maison attended our workshop and visited the centre last February, this is what he had to say via his new smart device:
“I came to the place in the mall. I thought it’s going to be a furniture shop. It came to a surprise it has many special things for people that cannot do many things independently. I tried many buttons to turn on something.
My mum looked very interested. Then I saw something good. Tablet…. the lady showed me a saddle seat that can help me to sit straight, and we started to communicate using the tablet. Ahaaaa…now, we are connected! We talked about a few things. She showed me a few things to try. After I typed my talking, she seemed very interested.
Now you can imagine if I did not type, she couldn’t understand me… and I become a shadow. Not many people know that I can understand what they say; sometimes it is beyond their belief. Words without sound mean nothing for many people. Words for me mean I can tell people what is in my head. Imagine you have many things and ideas in your head and you cannot say them out. Frustrated? It is driving me crazy. Now why people think that I can’t understand what they say.
It’s very sad to accept. I hope some people can make a machine that can read my mind. I also want to tell people that everybody is the same and they should respect that. People like Rebecca, the occupational therapist at the ILCNSW, and her friends are very much needed. So they can help more people.”
How can I get involved?
If you have complex communication needs or are caring for someone who does, you may be interested in attending a future Everyone Connects workshop. To find out more, please email firstname.lastname@example.org.
At the Independent Living Centre NSW we hope to assist people with complex communication needs connect effectively to the world using telecommunications, increasing independence and quality of life.