How do non-verbal patients get their needs and wants across to staff in hospital?
After a recent hospital stay I have concerns about the level of accessibility that non-verbal patients (whether this be from a disability or from illness) have to a form of AAC (Augmentative and Alternative Communication) to enable them to communicate their needs and wants whilst in hospital. I would think communication in this situation is vital, the ability to tell staff if they are feeling unwell, in pain or if they need assistance. I am hoping that stroke wards give their patients access to communication boards or some form of AAC however at least in our local area I worry this is not the case. I had a friend ask me late last year if I could help her as she had a family member in hospital who had a fall and hit their head. They were no longer able to communicate and were becoming very frustrated and angry. I went online and found a variety of good hospital/health communication boards and resources, which I printed out for her. They were grateful.
In our situation we advised the hospital at our pre-op meeting of our daughter’s complex communication needs and how she communicates. It was all written down in her file. I guess we were hoping they would have some sort of communication board available to their staff to use with her. I am not sure who actually reads this information, as I know no one that we dealt with during our 8 days in hospital was aware of her issues. All the nurses would ask Caitlin questions and when they couldn’t understand what she was trying to say/sign they would just look to us to interpret. This was fine for our situation but what if the patient didn’t have someone there to interpret their communications for them. What happens then? It really worries and upsets me to think that these patients could be going through pain or feeling unwell because as a society we haven’t got basic procedures in place.
Prior to our hospital stay, I had prepared a number of resources that we took with us to assist our daughter as I wanted and needed her to have the ability to communicate with us. I started with a social story on her iPad explaining the operation she was going to have. I also had a variety of communication options at hospital including visuals, a health style communication board and a hospital communication page on her device. I am passionate about AAC and a huge advocate for making communication accessible to everyone. Unfortunately, I fear none of these resources are made available to other non-verbal patients.
I would love to hear from AAC users or their family members of any positive or negative stories in relation to communication in hospitals. It would be great to get an idea of the range of issues that exist and it would be great to hear of any hospitals or States that are doing a great job.
- Tagged AAC, AGOSCI, Alternative and Augmentative communication, communication, communication app, communication device, complex communication needs, disability, hospital, inclusion, iPad, key word sign, non verbal, Special needs, speech
I have helped start up a social group called iChat My Way for people of all ages who have complex communication needs and use or are learning to use alternative ways to communicate (like iPads, photos, pictures, signing and gestures etc). The aim of the group is to be a fun place where users, carers and siblings can practice their AAC use in the community, make friends and learn from each other. The group has the full support of management and staff at McDonalds who are also committed to increasing the communication accessibility of their restaurant for people with complex communication needs.
The issue I have now is how do we educate the rest of society to be patient, tolerant and accepting, allowing people with communication needs the time they require to express themselves, request information or order food.
At our meetings I have witnessed people rolling their eyes, standing behind our members tapping their foot, we have even had someone try to push in front of us. I think this is sad and I can’t believe that people think it is acceptable behaviour.
What I have realised is that society is not use to people with communication needs having the technology to allow them to have a voice. In the past parents or carers would have ordered for them. They would not have been able to express themselves or request information or tell you a story. So with this new technology and with the person centred approach to disabilities giving people with disabilities a greater sense of community and value, it may now be time to start educating the rest of society and making them aware of people with communication needs.
Society has learnt to be aware and empathetic towards people who are blind or who are deaf. Now it is time they become empathic and aware of people who have complex communication needs.
In my aspirations to help as many people as I can I have created, with the assistance of a speech therapist I met during my presentations this year, a fun social group called iChat My Way. We are starting this group to support people, of all ages, with complex communication needs to meet others who use alternative ways to communicate (AAC) and their carers in our local area. The aim of this group is to socialise, practice using AAC in the community and learn from each other about using different AAC methods. But most of all making new friends and having fun.
We have just had our first meeting and although it was a small get together it was still very rewarding and a lot of fun. It was held at our local McDonalds who have been amazing in making their restaurant communication accessible. They have even learnt some Key Word Signs to use when we order and they have menu choice boards made up for us to enable people unable to speak to point and order what they want.
In the past I have always ordered what I thought my daughter wanted to eat or drink. She didn’t have the capacity until recently with her iPad Mini to order or make decisions for herself. I now know that I wasn’t always correct.
At the group on the weekend this was witnessed again. There was a young girl who attended and using her few words and the menu choice board she ordered herself a Happy Meal with a cheeseburger, apple slices and a strawberry shake. We all had a laugh when her mother said “I would never have guessed that’s what she would have ordered. Normally I order her nuggets and fries.” It shows us that as parents we don’t always get it right. But as a parent with a child with complex communication needs we do our best.
We all had a great day and loved ordering our own meals, sharing iPads, playing in the playground and using a number of different ways to communicate to the McDonalds staff. I think the McDonald’s staff enjoyed the day as much as we did.
This is a very special photo. It is our daughter ordering McDonalds for the very first time on her own using her iPad communication app. She was so happy and proud of herself. I reckon they were the best tasting fries she has ever had. What’s next???
The day had finally come. It was time for me to present my paper AAC Journey – Connecting with Success. This was the story of our daughter’s AAC journey to date. What has worked and hasn’t worked for us. How she is connecting to the community with success including how I have set up her iPad to communicate when her signing or speech isn’t an option for her.
My husband and daughter arrived to watch me along with some supportive people that I have met along our journey. It was an amazing experience standing in front of a group of people who were there to listen to me and were interested in sharing our story. I only hope they enjoyed and learnt something from our journey.
To start my presentation I asked my daughter to come up with me and introduce herself using her iPad and tell everyone how old she was. I then asked her what her favourite TV shows were. She signed ‘I’ for iCarly and said Spongebob. I wanted to demonstrate how she uses her different modes of communicating depending on what works for her.
I explained to everyone my daughter’s multimodal approach to communicating and how this enables her to succeed in an expanding number of social situations. Her limited speech, signing, gestures and body language are her preferred methods of communicating however she now has the iPad to compliment these methods.
I was really happy with how my presentation went and received some great feedback.
Congratulations and thank you to all the organisers of the Agosci Conference. I had a fantastic time and met some truly inspirational people.
Over the next week I look forward to sharing with you some of my experiences from the conference.