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.

Complex Communication Needs – How Do We Educate Society?

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.

iChat My Way – my newest endeavour

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. 

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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.

Imagine being non verbal – How Would You Communicate?

Imagine not having speech to communicate.  My daughter often amazes me with her determination and the way she overcomes the challenges of her disabilities.

She was diagnosed with a metabolic disorder called Galactosaemia when she was 7 days old.  We were told that there would be a chance she would have speech issues so when she wasn’t making any babbling noises or speech by the time she was 10 months and in fact she wasn’t meeting any of her milestones at this stage we were concerned and got help from a local centre and a combination of therapists became involved in our lives to assist us.  This included a speech therapist and shortly after she was diagnosed with severe verbal dyspraxia.  Her receptive skills are relatively normal in comparison to her expressive skills and we have always talked to her appropriately for her age.

If we want to say something we just SAY IT.  We don’t think about it, the words just come out without much thought.  Image if you didn’t have the vocabulary to tell people your thoughts, needs or wants.  What would you do? How would you behave?

Our daughter started displaying worrying behaviours when she was about 18 months, before this she just cried a lot but now she started hitting herself and others, pulling clumps of her own hair out, head banging and yelling.

After having a meeting with our Speech Therapist it was decided to start teaching her sign language to try and alleviate her frustration.  We started Makaton Signing (now Key Word Sign) where she learnt just basic signs to start with being help, more, ok, yes and no which we increased over time.   We saw an improvement in her behaviours nearly immediately and she became a much happier girl.  This was the start of her communication journey.

Over the years we have tried other methods of alternative communication including PODD books, Dynavox M3 (voice output device) and picture cards.

She is now 11 years old and is still predominately non-verbal.  She has about 15 words which we call survival words.  These include, Mum, Dad, yes, no, car, an important one for kids Santa, ok and a few others.  We call these survival words as they can get her a long way in a conversation.   Her receptive language is quite normal and we talk to her like we would talk to any 11 year old.  She still yells when she is not getting her way or when she is frustrated but her other behaviours have nearly disappeared.  Occasionally, through frustration she will still act out.  But I empathise with her as it must be hard to have your thoughts and feelings trapped in your mind and not being about to get them out.  Or you can only get your thoughts out in summary as you haven’t got access to all the words you want to say.

Imagine having an expressive language base of 15 words yet the receptive language base of around 11 years.  That is quite a big difference between what you want to say and what you are actually able to say with speech. How does she overcome this?  She is actually a fantastic communicator and people who meet her are amazed at how well she can get her message across without speech.

She does it by being multimodal.  She combines all of the skills she has learnt together to say what she wants. She uses her survival words with a lot of emotion, body language and gestures.  She also combines these words with her signing.  She would now have over 100 signs in her vocabulary.  If you still don’t understand her she will either take you or show you want she is talking about or she will just make you feel stupid and incompetent as she puts her hand up and raises her eye brows always with a smile though.  Basically saying “don’t worry about it”.

It’s not often she doesn’t get her message across.  She is amazing.

We have now also introduced an iPad to her for communicating.  We are using an app called Touchchat after consultation and assessments by her speech therapist and we are setting this up for her to be able to communicate in the wider community and to be used in situations where signing isn’t an option for her as not everyone knows it.  She is loving her new device and is starting to incorporate it with her multitude of other communication options.  She may not be able to speak like us but I think she has a better understanding of the fact that communicating means more than just speech it is the incorporation of a number of different methods all used together to get a message across.  She is a master at this.

We are so proud of her.