Complex Communication Needs in Hospital

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.

Communication Partners play a Major Role in Success

The timing is right!  I am a believer that for people to learn the timing has to be right.  By this I mean they have to want to learn, they have to be in an environment that promotes learning and there has to be an agreed outcome.

My daughter goes to high school next year and one of the concerns raised is her ability to communicate with the other students, teachers and carers at the school.  So I became motivated to improve her use of her communication device and I became a motivated communication partner.

In partnership with our speech therapist we are now having weekly sessions and learning ways to promote my daughter’s use of her device.  We have been using the same app for a number of years but it has never really been set up for efficient use and she hasn’t been motivated to use it, BEFORE NOW.  Now she has a team behind her.  It is amazing the progress a person can make when they are given the opportunities to have a go and they experience success (and failure) and have people around them motivating and encouraging them.  She takes her device everywhere now including school and appointments and people are amazed at her use of the device and now she even tries to initiate conversations.  Don’t get me wrong there is still a long way to go.

In a couple of months she has progressed from a very basic format on her communication app to a more complex format.  She has progressed from one word statements to now making simple sentences.  We are even introducing plurals, past and present tense into her vocab.  She is enjoying using it and is using it regularly even at home to tell us what’s on her mind, to tell us how she is feeling or what she want’s to do.  I am so proud of my girl, she is such an inspiration and she never gives up. She is patient with her communication partners it’s a shame we aren’t always patient with her when she is communicating. 

I now understand the importance of being a good communication partner for people with complex communication needs who use alternative methods of communication (AAC) like my daughter.  I have learnt that my role and the role of a communication partner isn’t just listening to them.  It is giving them the opportunities to learn to communicate their needs, wants and choices in a non judgmental environment.  It is modeling correct sentence structure and helping them catch up on the lessons we are taught from birth with speech.  It doesn’t take us months to learn to talk in sentences however, at times we give people a device and expect that they will pick it up and suddenly be able to communicate in full sentences and proper grammar.  We are kidding ourselves. 

By a communication partner I mean the person that they are trying to communicate with which includes family, friends and all other members of the community they try to converse with.  

If there is one thing I hope you get out of the blog entry, it is that you learn the importance of YOU as a communication partner to people who use alternative methods of communication like iPads.  They need you to be patient and give them time to communicate their message, respond to them appropriately, don’t be scared to ask questions or make a comment, they would love the feedback and show interest and respect in what they have to say.  Basically, give them the right to have a voice.

My daughters realisation – I’m not Alone

Last week at the conference my daughter and husband arrived in time to see the presentation before mine, which was presented by a lovely young lady who uses AAC to communicate.  She gave her perspective on what it’s like to be non verbal and it’s challenges.

My daughter sat there with an amazed look on her face.  She hit my arm and after she got my attention she pointed at the young lady.  It was then it hit me…

My daughter had never experienced being in the presence of someone else that was non verbal and that used a device to communicate like her.  All through the presentation she laughed and watched intensely soaking it all in.  She listened to her talk, using her device and kept looking at me as if to say “look Mum, she’s just like me”.

It was after this moment I realised that very fact.  She hasn’t been around people with complex communication needs.  She hasn’t been around people who use AAC (alternative and augmentative communication) methods like iPads or speech output devices.  She goes to a mainstream school where there are no other students with communication needs.  She played soccer in a mainstream team with friends from school.

By no means am I saying that what we have done is a problem or is wrong but I do now realise that there is a need for her to socialise with people like her to help improve her awareness of her need to use her device to communicate and that she isn’t alone.  There are others just like her.  I want her to meet them and communicate with them.  The young men and women at the conference would be fantastic mentors for younger people like my daughter.

So here’s the irony – by mainstreaming our daughter we have limited her exposure to kids with needs similar to hers.  By having her at a mainstream school we have broadened the horizon of other kids in the school but we have limited her experience to some extent.

I still fully believe in mainstreaming my daughter at school but now realise the importance of giving her opportunities to meet other people with complex communication needs which will be a major focus for us over the coming 12 months.

AGOSCI Conference – Presentation Success

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.