It is recognised that the use of sign is an effective form of communication for some people who have a learning disability and their communication partners. Some of the article below was written in 2000, after a huge amount of work to introduce a sustainable approach to sign-supported communication. This was led by Speech and Language Therapy in the NHS and the local advocacy group and the article focuses on the work in a North West service in the 1990’s. The author no longer works for the NHS but now leads the Community Interest Company Total Communication Services CIC: www.totalcommunication.org
Throughout the 1970s, signing systems were introduced to people living in long-stay institutions who had communication impairments. Signing enabled people to express themselves using a different modality and supported people’s understanding of spoken language and context.
Makaton was the most widely recognised and used signing systems throughout services for people who have a learning disability.
In common with many social care settings in the 1980s, a Learning Disability Service in the North-West funded an individual to become a registered Makaton tutor. This person was able to provide training and support to a number of people, resulting in an increase in effective communication. Unfortunately, the tutor retired from training in the early 90s, and the service within the local area had no-one able to provide recognised training/signing training. I was appointed as the first full-time Speech and Language Therapist working with adults with learning disabilities in 1992, and quickly became aware that signing was a real challenge across many of the social care settings. By this stage, the only time staff remembered to sign was when I walked into the day centre! It helped that I co-incidentally shared a surname with the former signing tutor.
This lack of training resulted in a number of challenging situations:
Staff lost signing skills due to lack of support, revision and resources.
People entered the service from institutions and education with signing skills and were supported by staff who had not had access to relevant training.
Children were exposed to sign, but, as they moved through school, the continuity was dependent on an individual teacher’s skills and experience of signing.
People were beginning to participate in their local community following resettlement from the long-stay institutions. The community, however, did not have the signing or awareness skills required to establish and maintain relationships.
There was an inconsistent approach to the training of parents and families.
The above factors contributed to increased levels of frustrations for all communication partners. Other areas of concern included the decrease in accuracy of the signs as people (staff) formed them. Adaptation of signs to suit individuals and their needs is acceptable, but communication partners need to form signs in a consistent fashion to help prevent communication breakdown.
Signing Workshops
In the early 1990s, any materials were limited. In a pre-digital world, correspondence was via letter or phone call. Updates to vocabulary were not circulated and we had no way of finding out if any were planned. Makaton had a restricted vocabulary and did not meet the needs of people whose lives had become fuller and who needed to communicate an increased variety of messages, including expressing their sexuality or personal needs. Some services, such as Somerset, developed their own signing system. I visited Somerset in 1994 to look at their county-wide approach and their innovative approach to total communication.
The number of service users requiring input from Speech and Language Therapy back in the North-West service was huge, with a potential caseload of around 800, and resources scarce, so service managers in the local town agreed to release support workers to be trained as Total Communication Coordinators. We agreed the TC Coordinators would help to plan a large event, which aimed to raise awareness of the importance of communication across the range of services via different workshops held over three days.
The awareness of the potential of signing as a form of communication prompted a signing debate at the first event, which we christened the ‘Total Communication Conference’. The conference was an event for people with learning disabilities and support staff. It ran annually for five years, and throughout the event, around twelve workshops exploring all forms of total communication were offered.
For the very first of these Total Communication Conferences in 1996, the issue of signing was explored. The workshop was facilitated by the Oldham Civil Rights Group, made up of people with learning disabilities. The group considered why previous attempts to encourage signing borough-wide had not succeeded, and whether Makaton provide adequate accessibility in terms of vocabulary, training and resources, and what the available alternatives were.
The group considered the difference in the way Signalong was taught. A major plus point was the potential for sustainability of the approach. The methodology of learning handshapes, orientation, placement, movement and direction meant that course attendees were able to work out how to create a sign which they hadn’t seen produced just by the descriptions underneath the illustration. This is a key difference and fundamental to the approach. Once trained, Signalong empowers people to be able to develop their sign vocabulary and not be reliant on other courses in the future.
Over the next year, research and consultation took place throughout the borough to establish the need for signing training across services. The results showed a clear lack of signing awareness, knowledge and experience, and the massive need for a consistent approach.
At the 1997 Total Communication Conference, a wide variety of representatives from Health, Social Services and Education services in Oldham met with people who use the service and members of the civil rights group, to plan future developments for the implementation of a signing initiative. The different signing systems available were considered. The group decided that the Signalong system would be piloted, and that a special interest group would monitor progress and consider the development of a borough-wide policy in the use of sign to support people who have a learning disability.
Developments and Sustainability
By January 1998, there were eight Signalong Tutors in the local area. These included Speech and Language Therapists, Information Workers, a Drama Therapist and a Community Support Worker. By mid-1998, another eight tutors, funded by Education, were trained. Private service providers who at the time were offering support in the area, such as United Response and Independent Advocacy Services (IAS) have also funded tutors. We were trained by Gill and Mike Kennard, and for a while, there were more Signalong tutors in our local area than in the rest of the country.
The number of tutors has enabled an increased number of staff to be trained in Signalong. Tutors within the town updated each service on progress made and new Signalong resources, which they shared across services.
As the years rolled on we continued to develop our approach to teaching and encouraging sign. Each workshop at the annual Total communication conference had to use a variety of means of communicating, from using object and pictures through to teaching signing vocabulary.
At the Total Communication Conference 2000, we held a Samba workshop, incorporating signing, symbols, and objects wherever possible. Gill and Mike Kennard attended this conference, and my abiding memory of the closing ceremony is of them dancing to the samba band, with huge grins on their faces.
During the Total Communication Conference 2000, members of Burys’ Samba band, Zambura, attended on a voluntary basis, and their support was much appreciated. Zambura was an inclusive group with some very proficient drummers also having learning disabilities.
The aims of the session were as follows:
To experience Samba music and dance.
To explore rhythm and movement as a form of communication.
To be creative and have fun.
During the sessions, we looked at different aspects of communication, including communication through music and dance. For example, different rhythms can help express mood or urgency. We offered choices of instruments and a choice between drumming and dancing, gaining an insight into people’s methods of making choices. Support workers were encouraged to include information gathered from the workshop in a personal communication profile or dictionary. Over the three days, staff were encouraged to look for opportunities for communication, whether by choosing an instrument, learning a new sign, or responding to a facial expression. Basic signing was introduced.
During the conference workshop, participants were provided with a workshop booklet with photographs of Samba schools from across the world. The booklet contained information about the aims of the workshop and copies of the signs which were introduced. A list of ideas suggesting activities to do after the workshop was included.
Also at the 2000 event, representatives from Adult and Children’s Services reviewed how the use of Signalong was developing. The initial hopes and aspirations of the working party, which was established, in 1996 were revisited. The energy and resources spent over the five years were recognised. The belief that signing should be a valid and respected form of communication which is used and understood in the wider community was still held.
The review of the situation prompted this reflection:
All representatives felt that in order to ensure that progress continues, guidelines needed to be developed. This would ensure that future development and maintenance of Signalong would not depend upon individuals.
The work on signing is an example of joined-up thinking, and how services can work together towards a common goal. It was a real achievement to bring together a common approach to signing across a range of services for people of different ages. Adult services need to be aware of the needs of tomorrow’s adults in advance, to enable appropriate planning of services. Children with disabilities are learning to expect an opportunity to have their say, services need to be prepared to meet their requirements. Strong bonds need to be formed between all services that should not be dependent on individuals’ efforts. These bonds need continuous reinforcement with commitment and energy. None of us would pretend that the signing situation in the town is now perfect, and we still have many goals to achieve. The implementation and continual monitoring of Signalong over a number of agencies is our biggest challenge.
In Terms of the Present Day
It is gratifying to see that despite the radical cuts, Signalong is still taught across age ranges in the town and that there is less likelihood that children and adults move between settings and lose their communication partners. I don’t think I will ever understand why it is acceptable to stop using a communication approach once someone moves between settings. This is something which wouldn’t happen to a physical aid such as a wheelchair.
I still promote Signalong in my practice and remain a Signalong tutor.As a practitioner who can be commissioned into a service for a few days only to leave having delivered training, I feel Signalong is the only option where I could feel comfortable knowing that course attendees are equipped to continue independently.
The Total Communication Services CIC website is a testament to the work of self-advocates in promoting signing for support staff. Gareth, a self-advocate with autism who is a volunteer for Total Communication Services CIC, feels strongly that support staff need access to core vocabulary, and with the support of Signalong, we regularly share the core vocabulary signs.
https://youtu.be/CFxdXPn2fH0 (Gareth’s film on YouTube)
https://www.totalcommunication.org/training (TC training page)
Alison Matthews
Speech and Language Therapist
Director of Total Communication Services CIC
Emma Beckett and Samantha Owens are final year Speech and Language Therapy students from the University of Manchester. They were on placement with Total Communication Services CIC throughout lockdown and we have continued working together ever since.
The placement offered a unique challenge, as we had to think about how to work together throughout lockdown and how we could engage staff online in training. They set about working with our good friends from Bury People First to develop resources and then wrote and delivered training sessions to two local services. Emma describes her placement experience in the blog below beginning with the self- advocates followed by a review of the literature and an analysis of their project.
Total Communication Services CIC and Bury People First met on zoom each week through 2020 to discuss good communication, strategies and adjustments, which can be used to support communication with people with learning disabilities, and messages which were important to the group around communication that they wanted to share with health and social care staff. We used the notes from the meetings to develop an online short course.
Once we had secured live sessions, lots of thought had to go into making the materials interactive to maintain engagement amongst the staff, due to the online format. It was a challenge to condense the course materials into a two-hour timeframe while allowing time for group discussion. Also, working over Zoom comes with its own set of challenges, so we had to factor in time for microphones malfunctioning and breakout rooms failing.
The aim of the course was to increase staff members’ knowledge around understanding language in people with learning disabilities. We discussed why it is important to know about the level of understanding that the people we work with have, and the complexities of receptive communication and how it can be perceived. We discussed the theory behind understanding, including information around the speech chain and where this can be impaired, complexity of morphosyntax at sentence level, non-literal language, and facial expressions. Finally, we discussed using a total communication approach and what this involves, strategies to support understanding, accessible information, and the five good communication standards (RCSLT, 2013). Some scenarios of utterances which may be difficult for a person with communication difficulties to understand were included, one giving an example of using negation, where a member of staff informs a service user of an activity being cancelled by saying “we aren’t going out now”. The group responded well to this and were able to identify that negation can be difficult to understand. In the morning group, one attendee then asked us how negation can be avoided, and we had a discussion using the given scenario around offering alternatives, using gestures, removing objects of reference related to the cancelled activity, and using visual timetables to remove or cross out the activity. Later on in the session, we discussed the easy-read version of the Five Good Communication Standards, and how this document could be used as an auditing tool for services, as it is written from the perspective of the service user and includes checklists under each standard.
Communication difficulties are prevalent amongst people with learning disabilities of varied severities (Tuffrey-Wijne & McEnhill 2008), with 57.9%-81% of people with learning disabilities needing support with their communication (Smith, Manduchi, Burke, Carroll, McCallion & McCarron, 2019; Blackwell et al 1989; Law & Lester 1991). Communication facilitates and develops social relationships, choice-making, expression of oneself, self-identity and having control over one’s life (Dobson, Upadhyaya & Stanley, 2002; Thurman, 1997). The communication skills of people with learning disabilities are heavily influenced by the support they receive from communication partners (Bartlett & Bunning, 1997).
Healthcare staff frequently misestimate the communication abilities of people with learning disabilities. Generally, the person’s receptive communication level is overestimated, and hearing deficits underestimated (Purcell, Morris & McConkey, 1999; McConkey, Morris & Purcell, 1999; Kevan, 2003; Bartlett & Bunning, 1997; Bradshaw, 2001; Banat, Summers & Pring, 2002). Misestimation of communication ability in people with learning disabilities results in the person's needs not being met, an atmosphere that feels overwhelming and confusing, failure of communication partners adjusting their communication, and potentially, behaviour which can be seen as 'challenging' to staff, poor self-esteem, and isolation (Martin, O’Connor-Fenelon & Lyons, 2010; Kevan, 2003; McConkey et al, 1999; Bartlett & Bunning, 1997; Dobson et al, 2002). Healthcare staff should endeavour to make reasonable adjustments to enhance communication, as the person with learning disabilities may be incapable of altering their own communication methods (McConkey et al, 1999; Murphy, 2006; Kevan, 2003; Bartlett & Bunning, 1997). The training course that we delivered to staff was centred around staff adapting their communication style, and stepping into the world of the person with a learning disability, to support them to understand in their own way.
Evidence suggests that occurrences of service user-staff contact can be low in learning disability services, and it is reported that staff are likely to communicate verbally, regardless of the communication abilities of their communication partner (Bradshaw, 2001; McConkey et al, 1999; Martin et al, 2010). Research suggests that staff cannot always interpret non-verbal communication acts appropriately (Purcell et al, 1999; Iacono & Johnson, 2004). Martin et al’s (2010) study detailed aspects of staff communication, such as overuse of complicated and long sentences, overuse of questions, and providing inadequate response time for the person with learning disabilities. Staff often perceive their communication styles differently than their practice of them, and frequently cannot identify when the context of the situation is communicating to people with learning disabilities, rather than the staff members' speech (Bradshaw, 2001). The training course we developed outlines practical strategies for staff to utilise when supporting the understanding of those with learning disabilities, with a focus on techniques to adapt communication styles. We discussed simplifying language, supplementing speech with gestures, pictures, and objects, ensuring that the person has adequate processing time by using the six second rule (count to six before moving on to the next point, although it was stressed that this is an average and may be different for others), and ensuring to always check back understanding by asking the person to summarise the information in their own words, repeating the information and asking if they understand, and/or watching the person's response to see if it is appropriate to the information that has been given.
Positive experiences of staff communication were reported when staff took the time to listen and show empathy and kindness (Bell, 2012), when they took the time to make a double appointment and paid attention to non-verbal communication (Murphy, 2006), used a facilitative approach over a directive approach, spoke more slowly and clearly, used visual support (McConkey et al, 1999; Bartlett & Bunning, 1997), and used consistent methods of communication (Thurman, 1997). Positive experiences were reported in particular when staff took the time to get to know the individual (Martin, O'Connor-Fenelon & Lyons, 2010; Murphy, 2006; Whittington & Burns, 2005; McKenzie, Sharp, Paxton & Murray, 2002). The staff that attended our online course appeared to work closely with service users, and appeared to know them well. The group were able to give examples of service users they have had experiences with, and to ask specific questions relating to these service users.
There are a variety of things that influence staff practice. An important focus of this is the value that staff place on service users - do they see them as peers or patients? (McConkey et al, 1999). Many staff members experience frustration when working with people with learning disabilities. This can be due to a mutual lack of understanding (Murphy, 2006; Martin et al, 2010), lack of knowledge/training with the client group, lack of emotional support for staff (Bartlett & Bunning, 1997; Cumella & Martin, 2004), and coping with behaviour seen as 'challenging' (Whittington & Burns, 2005). If staff are given little training to understand why people with learning disabilities may present with behaviour that is seen as 'challenging', this can impact their view of the behaviour, which in turn, shapes their intervention approach towards it (McKenzie et al, 2002). Kevan (2003), Bartlett and Bunning (1997) discuss the concept of normalisation, and how staff may believe that they should practice with this client group by treating them 'the same as everyone else', not acknowledging the complex level of support required by people with learning disabilities. In order to obtain information from the attendees of the online course around influences is on their practice, a question was included in the evaluation and feedback form sent out following the session asking, "what support do you need to be able to implement the strategies learned on the course?". This was included in follow-up feedback as it was believed that the attendees would be more honest on an anonymised form than on camera in front of their colleagues.
Kevan (2003) notes that staff and services generally focus on discernible aspects of communication, with little acknowledgement of the person with learning disabilities' understanding, and McConkey et al (1999) identified recommendations of simplifying language and increasing non-verbal communication, with a particular area to be addressed in training 'matching language to client's understanding'. A priority for training outlined in a great deal of the research is for staff to be aware of their own communication style, and learn different modes of communication to increase their skills in using a total communication approach, to support the person's understanding and expression (Bell, 2012; Cumella & Martin, 2004; Whittington & Burns, 2005; Kevan, 2003; Thurman, 1997; McConkey et al, 1999; Martin et al, 2010; Murphy, 2006; Bartlett & Bunning, 1997; McKenzie et al, 2002). This includes adaptations to the environment to maximise the person's support for communication (Kevan, 2003), and using the environment to provide concrete context to information given (Bartlett & Bunning, 1997). The online course is centred around the mechanisms of understanding speech, language, and communication in people with learning disabilities, and how to support their understanding. There is little discussion around the expressive language of service users. This is due to the tendency of staff to focus on expressive over receptive communication. There is, however, a focus on the expressive language of staff members, and how this can be adapted to use a total communication approach. The course also discusses things to avoid in speech, such as negatives and abstract concepts.
Training can be more effective when developed with a focus on existing staff attitudes (Dobson et al, 2002), and when training is made more meaningful to them, by discussing and reflecting on their practice with real people that they work with rather than hypothetical clients (McKenzie, Sharp, Paxton & Murray, 2002; Shakespeare & Kleine, 2013). A heavy focus was placed on applying the online course content to specific service users that the staff work with. Staff shared their experiences in their practice, particularly in the activity at the end where course attendees were asked to apply the easy-read Five Good Communication Standards to their current practice, and think of ways that they could implement it further in their future practice. As training can be more effective when developed with knowledge of existing staff attitudes, it may have been appropriate to send out a pre-training questionnaire, in order to tailor the training more specifically to the learning objectives of the members of staff.
Training at this level should work towards a higher quality of communication environment, staff having the appropriate communication skills, demonstrable understanding of service users' communication abilities and needs, and evidence of the utilisation of a total communication approach across the staff team (Baker et al, 2010).
Appropriate training is likely to positively impact staff practice, however, it is important to note that there are deeper issues in services which training is insufficient to affect, the values of services and the examples they set for their staff teams are significant in shaping service delivery (Bell 2012; Cumella & Martin, 2004; Ravoux, Baker & Brown, 2012; Windley & Chapman, 2010; Thurman, 1997). The context staff are working in in terms of service design must be considered when providing training (McKenzie et al, 2002). Supervisor-facilitated sessions should be available consistently to staff as a safe space to discuss their concerns around working with people with LD as a means of ongoing learning (McKenzie, Sharp, Paxton & Murray, 2002; Whittington & Burns, 2005; Dobson et al, 2002; Ravoux et al, 2012). A particular area highlighted by health and social care staff is the need for access to support to cope with the stress of working with people with learning disabilities (Whittington & Burns, 2005; Ravoux et al, 2012). It is important to liaise with the multidisciplinary team as part of the training package, to ensure that practice is put in place to help staff to talk about their concerns and manage their wellbeing. As part of the online course, we have offered follow-up advice to the companies who took part, to support them in implementing new strategies learned. It is outside the scope of the trainers to make changes to the designs of the services we provide training to; however, it is important to provide as much support as possible to facilitate these changes.
The most important part of training for me is the changes that occur as a result of it. Due to this, I wanted to ask the attendees to complete two evaluation and feedback forms, one immediately after the course, and one in four-six weeks, so that we are able to measure the changes to staff knowledge pre- and post-training, and then to gather information on how the training has impacted the staff members’ practice and the consequential impact this has for the people that they work with. The evaluation and feedback forms also identify which parts of the course materials were engaging and which bits need to be adapted for future deliveries of the course.
We received three feedback forms. The roles of those who replied were director of care, assistant manager, and care coordinator. The feedback was as follows:
Ease of engagement with course materials
P1: Documents presented in easily understood format, difficult online as it is harder to read from a screen, a couple of the slides had too much written information (8/10)
P2: Felt comfortable and relaxed on the course, was easy to participate, answers were listened to and discussed, good use of zoom (9/10)
P3: Fantastic discussions (10/10)
Ease of engagement with course facilitators
P1: Not the same as face to face, felt people were conscious of interrupting and speaking over people, difficult without the physical interaction with the therapist teaching the course, was unable to contribute to the latter half of the session because I was muted as I forgot to switch my phone off (8/10)
P2: Things were explained clearly, questions were answered in depth and with great understanding (10/10)
P3: All course providers gave good, clear answers and questions. Gave me the opportunity to think outside of my usual way of communicating (10/10)
Rate your knowledge
How speech and language is understood
Before the course
P1: 6/10
P2: 5/10
P3: 8/10
After the course
P1: 8/10
P2: 9/10
P3: 10/10
How speech and language may be interpreted differently by people with communication difficulties
Before the course
P1: 6/10
P2: 4/10
P3: 7/10
After the course
P1: 8/10
P2: 8/10
P3: 10/10
Strategies to help people with learning disabilities and/or autism understand
Before the course
P1: 6/10
P2: 7/10
P3: 8/10
After the course
P1: 8/10
P2: 9/10
P3: 10/10
Strategies to help people with learning disabilities and/or autism in meetings
Before the course
P1: 6/10
P2: 7/10
P3: 7/10
After the course
P1: 8/10
P2: 9/10
P3: 10/10
Using a total communication approach
Before the course
P1: 6/10
P2: 5/10
P3: 8/10
After the course
P1: 8/10
P2: 8/10
P3: 10/10
Accessible information
Before the course
P1: 6/10
P2: 8/10
P3: 7/10
After the course
P1: 8/10
P2: 10/10
P3: 10/10
Facilitating choices
Before the course
P1: 6/10
P2: 6/10
P3: 8/10
After the course
P1: 8/10
P2: 9/10
P3: 10/10
Which strategies included in the course will be useful in your practice? How will you implement these into your practice?
P1: It is always good to relearn material and be reminded of the basics, I think for staff who are experiencing total communication strategies for the first time the course needs to be less wordy at the beginning and some practical examples at the beginning would help people relax into the session.
P2: Tailoring strategies to meet the individual’s needs. Using visual aids, photographs, implementing the 6 second processing time rule in conversation, physical cues, using more positive and less complicated language, chunking information.
P3: Using visual support, checking back understanding, using accessible information.
What support do you need to be able to implement these strategies?
P1: Staff need to understand the importance of communication and how we are barriers to communication, staff will need support to record daily activities which include thinking about communication first.
P2: Time to work with clients and staff to implement the strategies and establish a consistent approach that works. Funding for further staff development, resources, and equipment if necessary.
P3: I feel that our company give both employees and clients the opportunity to increase their learning and knowledge base with communication. However, I do think that having more access to bespoke learning skills may increase our understanding.
How do you think the implementation of these strategies will change the lives of the service users that you work with?
P1: We support people who receive individualised budgets so it is imperative that we offer every opportunity and support to express their choices and wishes and to understand the services we offer, we support individuals to live their daily lives the way they want to so total communication is key to giving people processing time and express their needs.
P2: Empowers our service users that they have a voice, choice, and control over their own support and lives. Build stronger and more trusting relationships between clients and staff. Service users will receive more person-centred care and support.
P3: It will give clients a better choice base. Offer a more independent way of living and communication.
Additional feedback
P1: Had to change form to word to make us able to respond (this may impact on feedback if people are having to print the form and scan or email back. I enjoyed the session but I imagine some staff may feel a bit intimidated by the formal slides with lots of written information at the beginning of the session, an icebreaker or visual example of some of the challenges people face may be helpful to get staff thinking first – maybe an example of when they have been in a situation where they feel they couldn’t explain themselves or were misunderstood and how this made them feel. I found it difficult to do the course on Zoom as I am a visual learner and like to be in the room with people. Hopefully as Covid restrictions life we can share training the old fashioned way and share ideas and examples in person.
P2: Thank you for taking the time to offer us this training, it was really useful for our team and will be cascaded throughout the company. It had good content and was a good refresher and I think we will all be more mindful about how we communicate as a result.
P3: Thank you all for taking the time to offer us this training, it has been insightful and useful.
As mentioned in the additional feedback, the format of the form had to be changed in order for the attendees to write comments. A further two forms were received showing that the participants had made gains in all areas however they were unable to detail these in the comment section.
The second feedback form to see what differences have been made to the attendees’ practice was sent, but we did not receive any responses.
This has been an invaluable learning experience. Training needs to be adaptable to suit the situation, particularly in the current climate with many training courses being delivered in an online format. New and creative ways must be explored to ensure that sessions are interactive. Using visual examples and asking the group to discuss where communication has broken down was an effective way of prompting discussion amongst the group, and led on to some interesting examples and sharing of ideas. If we were to do the session again, the inclusion of a word cloud or a padlet or a Zoom poll to obtain immediate feedback from the group may be beneficial. An anonymised pre-training questionnaire may also be useful, to obtain a view of the context staff are working in, and their attitudes and perspectives towards their practice, to inform the training package and the way it should be adapted to be delivered to them as an individual team.
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Updated: Oct 21, 2021
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.
