Communication is a vital aspect of life. Good communication can facilitate increased quality of life, and misunderstanding or being misunderstood can lead to outcomes which are detrimental to the long-term wellbeing of those with learning disabilities. The social model of disability suggests that the environment holds the barriers to communication for people with learning disabilities, and not their learning disability. Therefore, staff training around communication is important. People with learning disabilities should have the opportunity to be involved in their services, and have their voices heard. Co-production can facilitate service delivery which is effective and meaningful to service users.
A group of self-advocates with learning disabilities from Bury People First have been meeting with a speech and language therapist, students, and social workers, to co-produce training materials for health and social care staff about communicating with people with learning disabilities. This piece focuses on our Design Day, although the reflection is illustrated by quotes from the group from different sessions.
Following saying hello and seeing how everyone was doing, the session began with a blank sheet of flipchart paper, a graphic artist, and a pen. The question was asked “what do you want staff to know about communication?”. Rebecca said, “that you have the right to have enough of the right, consistent staff who are patient, and able to work with all people with learning disabilities, however they communicate”. Aimee said, “everyone needs to know that people have different ways of communicating, and they need to be heard”. Mandy said, “people need support to speak up – support and funding”. Jenny said, “know about all forms of communication – not everybody is the same. Think creatively, especially if someone has less understanding – let them be involved in their own care”. Jenny and Darren talked about challenging behaviour, and how when it presents, it is the responsibility of the staff to find out how the person communicates, they said, “if you can find out how the person communicates, you can support them”. Darren also discussed how it might be helpful to “use pictures and videos of people who can’t speak”. Gwynn said, “get to know the person with learning disabilities, talk to them nicely and calmly – they’re supposed to make people feel better”. The group agreed it would help staff in training to see different examples of the consequences of not communicating appropriately. Throughout the discussion, the graphic artist drew the points raised on flipchart paper, so that we had a poster summarising the session, and the groups thoughts and feelings.
Communication plays a large part of human life, involved in learning, employment, relationships, and being a member of society. The ability to communicate effectively increases participation in everyday life (Money, 2016). Good communication supports the facilitation of choices, expression of feelings and needs, and being involved in the world. Outcomes for individuals who are communicated with effectively should be that the person’s preferred methods of communication are used and valued by those around them, that the person is actively listened to with time taken to support their communication, the person receives the professional support that they need to communicate to their full potential, communication resources are freely accessible to the person throughout their life, and that policies and strategies that affect the person consider their communication and include them in appropriate ways. This is likely to require a total communication approach, using a variety of tools, strategies, and technologies (RCSLT, 2013; Money, 2016).
Misunderstanding or being misunderstood can affect the wellbeing of the individual in a variety of ways. These include health inequality, withdrawal and social isolation, poor mental health, increased vulnerability, increased incidents of ‘challenging’ behaviour, difficult transitions, lack of access to social services, reduced opportunities for education and employment, reduced housing opportunities, lack of a person-centred approach to care for the person, and overestimation of the person’s abilities (Money, 2016). An example of how social isolation can occur as a result of a poor communication environment was given by Stephen, a group member. When asked what he thought of communication devices, he said “I wouldn’t know anything about my friend without them”.
The social model of disability suggests that the environment and society hold the barriers to communication for people with learning disabilities (Sadler, Fulford & Hoff, 2009). Speech and language therapists should endeavour to practice in the context of the social model by working with people with learning disabilities to explore their abilities, and working with the multidisciplinary team around people with learning disabilities to help them learn how to adapt their communication, to support the communication style of those they are working with (Baker et al, 2010). In the words of our group member, Rebecca: “There’s got to be a way around things in the world, some people can’t see, or hear, or talk. Person centred planning is important … Educate the world, educate them all about communication!”. Rebecca also questioned “why are all people with disabilities put in the same box? People are looked at for what they can’t do, instead of what they can do”. It is important that training is mandatory for staff across health and social care settings. As Rebecca expressed, “temporary staff don’t always have the knowledge, awareness, or understanding and don’t make an effort to get to know people – it’s a shame”. The acknowledgement of the social model has prompted a focus around valuing service users and their involvement in service delivery, to increase the responsiveness of services and their outcomes of intervention (Young, 2006).
People with learning disabilities frequently desire to be meaningfully involved in the services that they access, however, an imbalance of power between people with learning disabilities and staff often leave the former feeling unheard (Hoole & Morgan, 2010). Andy, a group member, said “it is alright learning all the stuff for training but will the staff listen? In my experience staff haven’t listened and they aren’t interested”. We talked about appealing to staff on an emotional level by illustrating the training with real world examples. Andy said, “a lot of carers don’t listen to people with learning disabilities because we are disabled and they think they know better, at the end of the day we are just numbers that they are getting paid to look after”. The social worker talked about writing a poem on this subject, and Andy said he would need support as he is “not good at artistic writing” – the group assured him we would do it together.
Service users have their own expertise from their experiences, which can be used to shape effective service development and person-centred practice (Hoole & Morgan, 2010; Sadler, Fulford & Hoff, 2009; Franits, 2005; Iezzoni & Long-Bellil, 2012). Service users should be involved in speech and language therapy service provision when intervening with services for people with learning disabilities (Baker et al, 2010). Co-production of service planning and delivery is essential, to consider the impact that the service has on service users’ lives (Richards, Williams & Przybylak, 2018).
There are considerations to be made when co-producing materials. The ambiguity around what co-production entails can present a challenge in itself (Filipe, Renedo & Marston, 2017). This was reflected when a group member suggested that co-production is not truly co-production unless it begins with a blank page. When the session did begin with a blank page, members with more complex needs required prompts to engage with the session. The inclusion of visual support to stimulate discussion can encourage higher engagement levels amongst these members. There have been instances of group members with more complex needs getting frustrated at not getting a chance to contribute regardless of whether there was a blank page, such as Mandy expressing that “I haven’t spoke, and then described how another member ‘ is like that’ [gestured mouth moving with hand] all the time”, reflecting the importance of ensuring everyone has a chance to contribute, particularly with the online format. Co-producing materials also undoubtedly takes more time, in developing resources and within the group sessions, as the group members require multi-modal information such as accessible information, as well as physical examples shown on camera, examples using videos, and time for facilitators to check that the group members have understood through discussion before moving to the next point. It is important to note that there is still a role of health and social care professionals in facilitating sessions, using their experience of services and their contacts to ensure self-advocates are heard (Roberts, Greenhill & Talbot, 2011), and amalgamating their expertise with that of the group members (Richards, Williams & Przybylak, 2018). Inclusive communication is the responsibility of all, but the inclusion of speech and language therapists’ expertise around speech, language, and communication is required to facilitate the development of communication skills of others in the multidisciplinary team (Money, 2016).
Despite the challenges that co-production may involve, it is imperative that people with learning disabilities are supported to take ownership over their human rights, and to have the opportunity to advocate for themselves and others, and extending this to involvement in staff training and service design to maximise their own opportunities (Roberts, Greenhill & Talbot, 2011). The involvement of service users in staff training can often add a personal element which resonates with staff, with real world examples of how poor communicational exchanges can negatively affect people. Service users who have taken part in co-production describe feeling empowered by being given the opportunity to share their experiences, by the opportunity to self-advocate, role reversal of the person with a learning disability becoming the teacher, and experienced increased confidence, friendships and opportunities following the project (Flynn et al, 2019). This was echoed with the group members from Bury People first. When asked what they enjoyed about the group, Aimee said “learning to sign and meeting you guys’, and Alex said, ‘being on the computer and chatting to people”. The empowerment of self-advocacy and opportunities to share experiences have led to group members wanting to spread their words further, with regular requests to protest at Downing Street for the right to communicate, to campaign locally, and to make videos to be sent into BBC to go on North West Tonight. Rebecca made the point that approaching media outlets with information about communication could help to generalise skills to the general population, so that people with learning disabilities are supported to communicate in the streets and the wider community.
Applying a total communication approach to communicating with the group has facilitated group discussions, and ensured that all group members have had the opportunity for their voices to be heard. I have learned a lot about how vocal the community with learning disabilities are about their rights, and what they want in life. It has been a learning experience working with this client group over Zoom. For example, as a group, we regularly practice Signalong. Having an appropriate signing window on Zoom has proved to be a challenge, and the group members frequently have difficulties understanding whether their camera needs to go up or down, left, or right, or closer or further away, in order for us to see them properly. I have learned that it is helpful to have other facilitators in the session when using an online format, so that facilitators who are not talking to the group at the time can pay attention to the group and Zoom to ensure the session is running smoothly, and everyone has a chance to contribute. Having access to the graphic artist is particularly valuable when discussing a large topic, helping the group to remember what we have spoken about already, and allowing for repetition of concepts with visual support. Most importantly, I have learned how let down some of the group members feel at the services they have encountered in their lives. The greatest learning point for me from this experience has been how important it is to take the time to listen to people’s experiences and their feelings around these. It is knowledge of these experiences and the impact they have had that should shape our services, to ensure more positive accounts in the future.
References
Baker, V., et al. (2010). Adults with Learning Disabilities. RCSLT Position Paper. London: RCSLT.
Bates, P. & Davis, F.A. (2004). Social Capital, Social Inclusion, and Services for People with Learning Disabilities. Disability and Society, 19(3). 195-207.
Filipe, A., Renedo, A. & Marston, C. (2017). The Co-Production of What? Knowledge, Values, and Social Relations in Health Care. PLoS Biology, 15(5). e2001403.
Flynn, S., Hastings, R.P., McNamara, R., Gillespie, D., Randell, E., Richards, L. & Taylor, Z. (2019). Who’s Challenging Who? A Co-Produced Approach for Training Staff in Learning Disability Services About Challenging Behaviour. Tizard Learning Disability Review, 24(4). 192-199.
Franits, L.E. (2005). Nothing About Us Without Us: Searching for the Narrative of Disability. American Journal of Occupational Therapy, 59. 577-579.
Hoole, L. & Morgan, S. (2010). ‘It’s Only Right That We Get Involved’: Service User Perspectives on Involvement in Learning Disability Services. British Journal of Learning Disabilities, 39. 5-10.
Iezzoni, L.I. & Long-Bellil, L.M. (2012). Training Physicians About Caring for Persons with Disabilities: “Nothing About Us Without Us!”. Disability and Health Journal, 5. 136-139.
Money, D. (2016). Inclusive Communication and the Role of Speech and Language Therapy. RCSLT Position Paper. London: RCSLT.
RCSLT. (2013). Five Good Communication Standards. London: RCSLT.
Richards, L., Williams, B. & Przybylak, P. (2018). The Experiences of People with Learning Disabilities in Co-Produced Challenging Behaviour Training. Learning Disability Practice, 21(4).
Roberts, A., Greenhill, B. & Talbot, A. (2011). ‘Standing Up for My Human Rights’: A Group’s Journey Beyond Consultation Towards Co-Production. British Journal of Learning Disabilities, 40. 292-301.
Sadler, J.Z., Fulford, B. & Hoff, P. (2009). Nothing About Us Without Us! Current Opinion in Psychiatry, 22. 607-608.
Young, A.F. (2006). Obtaining Views on Health Care from People with Learning Disabilities and Severe Mental Health Problems. British Journal of Learning Disabilities, 34. 11-19.
This blog is written by Walt Reid, a supporter of Total communication Services CIC. Walt’s interest in all forms of communication and history are combined in his role as a guide. Walt’s blog considers the powerful impact reminiscence can have on all of us and in particular people with dementia and how in terms of a therapeutic approach we are looking at engagement and positive experience.
Dementia is a persistent disorder of mental processes caused by brain disease or injury and marked by memory loss, confusion, personality changes and impaired reasoning. The commonest form of dementia is Alzheimer’s disease. Working as I do in the cottage in Styal village I often have occasion to welcome visitors who experience the challenges
of dementia. There was one day, as I was beginning a tour, a family who were visiting with an elderly relative pointed out that she suffers with dementia. “but was no trouble”. As we moved from room to room I was struck by the rapt expression on her face. She never spoke a word during the whole time of the tour but as she left she shook my hand warmly and offered me a contented smile. I remember thinking how happy she seemed and that for those few moments wherever she had been transported to, was a happy place or time which she couldn’t express in words as she was non- verbal.
For a few moments I envied her and wondered how memories can be therapeutic for those experiencing dementia.
It took me back to the first time I myself visited the cottage in preparation for leading tours as an interpretation assistant. Standing at the top of the stairs and looking down I was suddenly transported back to my own childhood. I was a boy again, aged three years and standing at the top of a chasm, holding tight to the handrail and emerging into the back kitchen where my mother was hard at work preparing breakfast. The room was warm and welcoming, lit only from the flames dancing merrily in the hearth. For a fleeting moment I was back in the terrace house where I was born in the old mill town of Ashton.
All sorts of stimuli can evoke memories. One of the most powerful is our sense of smell. Nervous pathways of memory are closely linked to our sense of smell. Familiar smells can transport us back to our formative years. Sound and our sense of touch and taste are also powerful evokers of memory.
For this reason nostalgia relayed through different senses has
a part to play in therapy for people with dementia. Media for nostalgia can be through music, visual artefacts such as photographs and object . People who have dementia are usually able to recall long term memories but couldn’t remember what they had for breakfast or the names of their children. The same person might find no difficulty in singing a favourite song or naming long lost relatives in a photograph album.
Oral histories are a major way people can experience the “nostalgia effect.” You don't have to experience dementia to feel the soothing effect of listening to voices from a bye gone age.
In this regard people with dementia or simple memory loss can serve a useful function by relaying their reminiscences to others.
In a world where they are so reliant on others for most day to day functions. When they are asked about their past experience they can come into their own. Drawing upon a powerful faculty they may still possess. ie. Long term memory.
The heritage industry offers nostalgia experiences at many of its properties but also through it’s oral histories. The talking newspaper a popular broadcast started by the RNIB has employed this strategy. Intended for those with sight loss, it is now recognised as an aide to those with dementia - a great benefit for people who may be confined to their own home.
According to researchers in Bristol and Bangor pathways in the brain can be exercised through nostalgia. A reflection of
a bye gone age can be therapeutic to those who struggle with their memory loss, as it can be calming and help them deal with frustrations leading to aggression. Furthermore nostalgia can maintain brain function, help with thinking about the future as well as the past as these are shared pathways. Studies report that reminiscence and life review, (recalling former times or so called life story recall), can have beneficial effects for those with various kinds of dementia. These include improvement of mood, communication, cognitive function and quality of life.
I became a dementia friend in 2019. It’s something I would recommend and you can sign up by learning some simple facts about the illness. Next time I escort a party around the cottage in Styal, I shall do so with renewed vigour secure in the knowledge that I might be helping someone with dementia.
Sources
Ismail (2018) University of West England
Woods (2018) University of Bangor
Age UK
Dementia UK
Admittedly, before starting to study Speech and Language Therapy in September 2020 I think I had been quite ignorant to how inaccessible the world can be for people with learning disabilities and communication impairments. That’s not to say that I thought that accessibility was unimportant, but I had never been immersed in a world that needed extra support to access the world around them. I did not consider often enough how society functions mostly for those who do not need the help. Since my placement with Total Communication Services CIC/ Elysium Healthcare I have started to notice all the work that needs to be done. I have started to notice the poor quality of subtitles on most video platforms, the lack of willing support and patience in fast paced services such as coffee shops, banks, and post offices. I have also noticed that what some people might consider to be the ‘small details’ are in fact huge details or even impossible for someone who does not have the capability for them. I’ve never felt myself become so eager to be involved in change.
During my time with Alison at Total Communication Services, I spent some time creating accessible leaflets on various topics, like an introduction to Autism and DBT therapy. I spent a lot of time thinking about how a lot the people who might require these accessible leaflets will struggle with these so called ‘invisible illnesses’ and might not think to ask for information in a more simplistic way.
In 2016, the introduction of the ‘Accessible Information Standard’ made it mandatory that all organisations that provide NHS care make ‘reasonable adjustments’ to their services so anyone and everyone can access their services in the same way. Some of the adjustments being made you could argue are still not good enough, and some services are seemingly only providing the bare minimum. Despite this, the Standard is a massive leap forward. My next question would be: Why can this standard not be projected into the rest of society?
The Royal College of Speech and Language Therapists (RCSLT) are definitely trying! In November 2020, the RCSLT announced a new symbol that can be displayed outside of shops and businesses to highlight that the business has people at hand to help those with communication difficulties. Our various lockdowns have not allowed me to experience this symbol in the big wide world yet, but I am hopeful *with everything crossed* that it will be used and embraced!
Being exposed to all of this information has made me really consider who and how I want to be as a future Allied Health Professional and Speech and Language Therapist. If one of my client’s needs accessible information, such as simplified resources to help them do their therapy outside of our sessions, I know that I, myself, will need to be more accessible than perhaps I would normally be. This might be in how much time we spend on goals, my voice and language, my initial approaches with them…there is so much I am yet to learn, and I am so keen to involve myself with people that can teach me.
Whilst with Alison at Total Communication Services, I was invited to a self-advocacy group that spend a lot of time looking at ways they can raise awareness for the need of further accessibility in society for people with Learning disabilities, like themselves. It was such a privilege to have them provide me with feedback on the accessible leaflets I had been making because who am I, someone without a learning disability, to make a document aimed at people with a learning disability and claim it is accessible? They let me know what language was too difficult to understand, what images were too abstract, whether the font was too small or unintelligible. I cannot thank them enough for helping me, teaching me, and making me aware of the details I would not have even considered. Co-production should be an essential part of creating documents for anyone with an impairment.
Marika Lomax
Student Speech & Language Therapist
