Exploring sibling attitudes towards participation when the younger sibling has a severe speech and language disability

We were delighted to receive this publication from a friend and colleague, Prof Juan Bornman from Pretoria in South Africa. It reports on a study carried out with 27 typically developing children who have a younger sibling with a severe speech and language disability. Juan and her colleagues used Talking Mats to carried out an adapted structured interview to find out the views of these children on four everyday life situations identified by the WHO-ICF-CY (World Health Organisation’s International Classification of Functioning, Disability and Health, Children and Youth Version).

The four topics were:
Communication
Domestic life
Interpersonal interaction and relationships
Major life areas.

The findings showed that the children were ‘most positive towards participation in play activities with their sibling with a disability. They were also positive towards participation in household tasks. They were less positive towards communication participation and least positive about participation in interpersonal relationships’.

The following example is taken from Juan’s publication.

The overall findings suggest that the attitudes of the young children in the study towards participation with their younger siblings with severe speech and language disabilities were generally positive.

The article’s reference is:
Exploring sibling attitudes towards participation when the younger sibling has a severe speech and language disability. M Hansen, M Harty, J Bornman  South African Journal of Child Health 2016 Vol. 10 No. 1

To read the full publication with details of the methods used and the results click here sibling-attitudes-2016

Delighted to introduce you to ‘The Communication Game’ : a board game for staff to improve their communication skills.

How we  listen, talk and engage with people is fundamental to the quality and effectiveness of health and social care services. Although communication underpins everything we do in a work context, it can be a difficult topic for staff to talk easily about. Add to that the possibility of service users having an additional communication support need, through reasons like stroke, learning disability or dementia, then there is much potential for things to go awry and  unfortunately, they often do. ‘Poor communication’ is cited as the most common cause of frustration in complaints about services.

The Communication Game was developed by Focus Games, NHS Education for Scotland (NES) and Talking Mats. It is a learning tool to help staff working in the health & social care sector increase their knowledge and skills around communication.  The Communication Game is fun and easy to play. It can be played with or without a facilitator, and allows staff groups to have discussions and reflect on their communication skills. It allows them the chance to learn from each other. It will improve knowledge, but more importantly enable them to think about the small steps they can make to improve their interactions.

The project grew out of two previous projects funded by NES: Making Communication Even Better and Through a Different Door. In these projects, it was recognised that the experience of services for people with a communication support need is something of a lottery. For them, there was a considerable difference in the experience of interacting with a staff member who was empathetic and able adapt to their communication, to interacting with a member of staff who was struggling and unable to adapt their interaction. Training and understanding of inclusive communication practice is key. It has been a great privilege for Talking Mats to continue to support the work of the previous 2 projects and work with Focus Games Ltd to develop The Communication Game. Support during the development process from the Stroke Association Scotland, Capability Scotland, RCSLT, Scottish Care, Communication Forum, Queen Margaret University and NHS Ayrshire & Arran SLT Department have been invaluable, and we are very grateful; also to NHS Education for Scotland for their continued input and funding.

If you are working with staff in the health and social care sector, then this will be a great resource for you. You can get The Communication Game from the Focus Games online shop. It is guaranteed to promote laughter learning, and a touch of competitive team spirit. Most importantly, it will be a catalyst to help develop staff communication, making interactions better for people with communication support needs.

You can find out more about the game at www.communicationgame.co.uk

, and follow the game on Twitter on @Comm_Game.

Get your copy at www.focusgames.com.

Many thanks to Ruth Spilman, Senior Speech and Language Therapist, for this great blog about how she uses Talking Mats for Capacity Assessments with People with ASD/LD

I am a speech and language therapist (SLT) working in a residential provision for young people with autism spectrum disorder, learning disabilities and other co-occurring difficulties. We support young people from 7 up to the age of 20. Many of the young people are in a ‘grey area’ with a view to capacity assessments, including those aged 16-18. We support many capacity assessments, including deputy-ship for finances and care, health and welfare, as well as more individualised capacity assessments around restrictions in the environment, consent to medical interventions and making decisions about the future.

A large part of the way we support these capacity assessments is by using Talking Mats, which support people with autism who generally prefer to think about things visually. The young people are encouraged to use Talking Mats in their everyday communication, such as evaluating activities, lessons and therapy sessions to develop their skills, as well as during direct Speech and Language Therapy work. If a young person has proven their competence using a Talking Mat, we can then move on to supporting capacity assessments. As part of the process, the SLT would break down the concepts needed to be understood to identify if the individual has capacity or not. For example with finances, do they know what money is? can they organise things that are expensive and cheap? can they put items in a scale of least to most expensive? This would all be done using a Talking Mat, then followed up if they achieved this task with a range of further activities. A Talking Mat can then support activities to evidence their understanding or lack of, while also giving a young person all practicable help to communicate.
See below two examples of a young person thinking about 1) money to support their finances, and 2) things that are healthy or not.

Talking mats are used for a range of different skills and assessments in the provision I work in, but their use for capacity assessment gives the young people the most practicable support with communication and allows for clear evidence of the person’s understanding of the concepts involved. In addition to the range of items mentioned above, we have have also discussed tattoos, physical intervention and behaviour support strategies, having a lock on an individual’s bedroom door, and understanding of fantasy and reality.
Talking Mats has proved to be a truly simple but brilliant and useful tool.

Ruth Spilman, Senior Speech and Language Therapist, Specialist services in education
The Cambian Group, Dorset, BH19 1PR www.cambiangroup.com

We are very grateful to Lauren Pettit and her colleagues from Pretoria, South Africa for sending us their published paper on a recent research project which used Talking Mats as a research method.

The study’s aim was to describe and compare the views of adults with aphasia, their significant others and their speech and language pathologists regarding the importance of nine life areas for the rehabilitation of adults with aphasia.

They used Talking Mats to support 15 adults with expressive aphasia to rate 9 life areas in terms of importance to them. The 9 life areas they included were Domestic Life, Relationships, Work and Education, Leisure, Self-care, Learning and Thinking, Coping, Communication and Mobility. These are taken from the World Health Organisation International Classification of Functioning Disability and Health (WHO-ICF). The researchers also obtained the ratings of 15 significant others and the 15 speech and language pathologists treating them.

They found that most life areas were rated as important to work on in rehabilitation by most participants. However, there were some discrepancies between the views of the adults with aphasia and the other 2 groups in the study and significant discrepancies were noted for 3 of the 9 life areas.

The graphs below show the comparisons of the 3 groups of participants. Click on graphs to enlarge

Fig1. People with aphasia

Fig2. Significant others

Fig3. Speech and language pathologists

The researchers suggest that ‘These life areas can provide the ‘common language’ for team members to engage in dialogue and identify problem areas related to the daily life functioning of people with expressive aphasia. By simplifying some of the labels of the activities and participation dimensions of the WHO-ICF and pairing these labels with pictures and the interactive Talking Mats interview procedure, adults with expressive aphasia (who often have difficulty participating in the selection of rehabilitation priorities) were able to express their own views. This may be a first step in assisting the adult with aphasia to advocate for themselves and to exercise their right to identify the activities and participation opportunities which they would like to access, and to set rehabilitation priorities based on their choice. While the overlap in priorities among the three groups as found in this study is encouraging, the presence of some significant differences underlines the importance of the voice of adults with aphasia themselves. This ensures truly client-centred rehabilitation that underscores the principles of human rights and a focus on competence rather than deficits’.

To link to the full article:  http://dx.doi.org/10.1080/10749357.2016.1207148aphasia

Please contact info@talkingmats if you would like to discuss using Talking Mats in research

This blog summarises a project we have completed providing Talking Mats training for families living with dementia. A key aspect of the work done by Talking Mats is to find ways to improve communication for families living with long term conditions. In particular dementia is a long term condition where deterioration in communication will eventually affect everyone. This makes it increasingly difficult to ensure that the person with dementia continues to be involved in decisions about their life.
We have completed a project funded by Health and Social Care ALLIANCE Scotland. Training in the use of Talking Mats was given to families living with dementia and staff who worked with these families. The Alliance Family Training final report highlights how this training helped people with dementia to communicate their views and be more involved in making decisions about their lives.

Families identified issues relating to self-management that they had not previously been aware of and new insights emerged as the following comments illustrate.(click on box to enlarge)

For some family members an important outcome was that Talking Mats helped them see that their spouse was satisfied with many aspects of his/her life. They found this very reassuring as many assumed that the person with dementia was frustrated and discontented.

The following is an example of how using Talking Mats helped with self-management.

When using Talking Mats on the topic of Where you live, G explained that he found it difficult to find his way to the toilet in the night. As a result his wife bought special senior night lights to help him which solved their problem. As a result, night times improved for both of them.

For further examples and information read the full report here Alliance Family Training final report  and for further information about Talking Mats Family training please contact info@talkingmats.com

Thanks to Laura Holmes for telling us more about the innovative work in Stockport.

As part of an ongoing project, we at NHS Stockport Children’s Speech and Language Therapy Service are introducing the Talking Mats approach to support the children we work with to contribute to their own EHC Planning, enabling them to make their voices heard.
For example, I have used the ‘Consulting Children and Young People – My Body and Skills’ (Primary) digital resource  to help identify and plan target areas for an 6 year old child with a diagnosis of Autism. I selected a top scale of ‘happy/unsure/not happy’ and chose a variety of options symbols from the resource. The child (R) was then able to drag and drop each option symbol to the area she felt it belonged in, producing the following talking mat:

Whilst completing the mat the child volunteered further information about particular options – in general I find I get to know the children I work with much quicker using this approach!
Once complete, we agreed that we would sub-mat the option ‘talking’ (which had been placed under ‘unsure’) and explore that option as a topic in our next therapy session.
I then thought about all the possible options I wanted to explore in this submat, and created symbols using Boardmaker. I was able to add these symbols as options for the digital mat by taking photos using my Ipad and selecting them from my camera roll.
R completed the submat as follows:

The mat enabled R to pinpoint the areas of talking she feels unsure about – i.e. ‘talking in front of my class/ in a large group’; ‘making choices’; ‘taking turns to talk’. I was then able to include this information in my review report, attaching the pictures of the mats as evidence of consultation. My review report included details of specific targets and recommendations to support R to work on the areas she had identified, which are designed to be incorporated into her EHC Plan.

We know from our own network that many practitioners are looking for training and tools to help implement the SEND reforms. Talking Mats are running a free seminar in Stockport to let practitioners see how Talking Mats can be used. The morning session is FULL  but we have added an afternoon session. Book your place now as it is first come first served and places are filling up fast.  Free Stockport afternoon seminar

Talking Mats considers both health and social aspects when it is used to include people in their care planning.  Lots of interesting comments are made by course participants on the forum in our online training course.  Annemarie, who works as an agency carer visiting clients in their own homes posted her thoughts about the social model of disability

 Remembering the person behind the condition

In my experience, society is fixated on the medical model, the ‘what’s wrong’ approach. Whilst the medical model is clearly a valuable and required tool, it often leads to labels that individuals are then lumbered with, such as, ‘she has dementia’, ‘she is visually impaired’, ‘he’s deaf’ or has a ‘leaning disability’. Taking this approach overlooks the person behind the ‘condition’ and so can restrict inclusion.  One example could be an individual with dementia being unable to make everyday choices about seemingly mundane issues such as what to wear that day. Using a medical model, a carer may be aware of the clients difficulties and make choices for them, whereas using the social model approach enables the carer to see beyond the condition and fully include the client, allowing them to be part of the decision making process for themselves. A second example could be a person with a communication disorder such as Asperger’s Syndrome. Access to work could be severely restricted using a medical model as the pragmatic manifestation of this condition may well exclude a person from seeking certain types of employment. Promoting the use of a social model would ensure work colleagues understood the possible limitations of the condition and ensure adequate support networks were in place. The social model attempts to embrace a person’s difference and raises awareness within society of individual needs that will facilitate inclusion into all aspects of life.

The WHO ICF -World Health Organisation International Classification Framework of Functioning, Disability and Health (2001, 2007b) aims to merge the medical and social model, encouraging professionals to think not only of the persons health condition and resulting impairment, but the impact this has on the persons participation and activities.  It captures the full complexity of people’s lives, including environmental and social factors and can be applied over different cultures

The Talking Mats Health and Well- being resource is based on the WHO ICF and supports a person to reflect and express their view on various aspects of their lives.  Using the Health and Well being  resource supports workers to remember the person behind the condition.

We are delighted to have received funding from Life Changes Trust to work with Patient Opinion to help improve the access to their website by developing a Talking Mats to enable people to tell their stories.

Like Talking Mats, Patient Opinion is a Social Enterprise and has an excellent independent website https://www.patientopinion.org.uk/  that enables people to share their experiences of UK health services, good or bad. They then pass the stories to the right people so that they can learn from them.

The project we are working on is focusing on people with dementia but in the long run we hope that lots of people will benefit.  It will bring our two innovative technologies together marrying the expertise of the Patient Opinion website with that of the Digital Talking Mats.

Our aim is that people affected by dementia can use their own voice to share their experiences and make real differences to relationships, services and culture, just as many others are already doing across health and care. We also hope that this work will empower others with communication or cognitive difficulties to share their experiences and be heard in an open and transparent way.

This ground breaking work is being funded and supported by Life Changes Trust, People Affected by Dementia programme. The Big Lottery funded programme is committed to working with people living with dementia and those who care for them, investing resources so that individuals are more able to face the challenges before them, and can exercise more choice and control in their own lives.

We expect the project to take 18 months to complete and have already run focus groups with people with dementia, family members and expert practitioners to plan the new symbols. We are now working with the technical experts to create the website interface which we will then pilot with people with dementia.

Watch this space for more updates…..

Thanks to Alison Matthews for a great guest blog on Talking Mats supporting people with learning disability to have a political voice  In the photo from left to right Alison Matthews, John Hendrickson ( chair of NW LDA) , Shahnaz Ashraf, Rosemary Trustam, Darren Heywood (vice chair)

The North West Learning Disability Alliance (LDA) is a campaign group focussing on the rights of people with learning disabilities. The NW regional self -advocates forum met twice to identify their priority concerns which were due to be discussed at the regional conference in Blackpool. Members of the NW LDA attended a conference planning event and  we discussed ways in which people could be supported to voice their views on services. It was agreed that given the need for local and national politicians representing their citizens to hear the views of people with learning disabilities, the conference would be a way to develop this with the help of social media. The NW LDA was then invited to have a stand at the conference in Blackpool.

Talking Mats seemed the obvious approach to support discussions around the concerns as it provided a structured means of people expressing their views and provided potential objectivity in that people could also praise services, as well as voice concerns, which in fact some did! We wanted to take photographs of people with their mats as we felt it would bring the concerns or issues to life, it certainly seemed a more powerful way of enabling people to speak out. Our idea then was to e mail relevant local councillor or MP and to support people to get their voices heard wherever possible.

Some of the challenge was in planning the vocabulary needed and in finding the appropriate visual scale. The list of concerns created by the self- advocates provided an ideal starting point.  The scale we opted for consisted of symbols which enabled people to say whether they were worried about the topic or happy/not concerned. The topic itself was ‘services’. Finding symbols was a real challenge so we opted for a mixture in the end, photos, symbols, photosymbols and our own line drawings.

We spent time with the self -advocates who produced a mat, first exploring their knowledge of social media, in particular Twitter and Facebook. Many already had accounts and e mail addresses, some people came ready with topics they wanted to get off their chests or people they wanted to praise.  Everyone said whether or not they wanted to e mail their MP or local councillor with a photo of them and their mat and whether they wanted us to post the photograph of them with a mat on social media.  For Twitter we used the hashtag our voices matter (#ourvoicesmatter).

People raised concerns about a variety of issues to do with service cuts, from cuts to the NHS and the need for local pharmacies to stay open, to cuts to transport and the need for additional support with relationships. One person mentioned specifically that she wanted to feel safe at home and talked about crime directed towards people with learning disabilities. Most people were worried about benefit cuts

We had some positive responses, one person wanted to highlight how happy she feels in her new flat and one person specifically wanted to compliment his local councillor who he felt really listened to people with learning disabilities. Ivan Lewis MP tweeted his support for the campaign. In terms of learning for next year’s conference, we will develop the vocabulary and the process of collecting e mail addresses and twitter accounts for MP’s. One very valuable lesson we learned about the numbers engaged in the activity was to hold next year’s sessions before the party on the last night.  It seems the participants at the self advocates conference work hard and play hard too!

Alison Matthews is a Speech & Language Therapist, Director of Total communication Services CIC and member of the North West Learning Disability Alliance

April 2016

Talking Mats was used as part of a Speech and Language therapy assessment  for a boy with a stammer (dysfluent speech).  He was very aware of his stammering and would change what he was going to say or avoid some situations because he anticipated that he would stammer. He had low self-esteem about his speech and felt that whenever anyone laughed in his class, it was to do with his stammer.

Talking Mats was used to gather information about which situations and  people made speaking easier, and any situations and particular people which caused more of a challenge.  The activity provided much more information than originally anticipated.

A starter mat was used  to show how a Talking Mat worked, using pictures of food. He engaged well with this, and understood the process quickly.  We then moved onto discussing his speech – we wrote names of people in his life and situations which involved speaking onto pieces of paper,  and he placed these on the mat where he felt appropriate.  We started with people and situations which appeared more positive, then gradually moved onto those it was anticipated would be more challenging.

His insight into his speech and what helped him or made speaking more difficult was impressive. We were able to use this information to compile a list of “Do’s and Don’t’s” for people he came into regular contact with. He agreed that this information could be shared with school to give them strategies to support him there.

The most powerful part of the Mat was him being able to say that he did not feel happy about talking with his big brother sometimes, because he could make fun of his speech, and this made him feel really upset. This was a powerful revelation for his Mum who had sat in on the session, as she had not realised he felt this way.    After the session, the family  had a chat around the table at tea-time about how his therapy session had gone that day – with Mum’s support he was able to say to his brother about how his teasing had made him feel. His older brother had thought it was all a bit of fun and hadn’t realised the impact it was having. They agreed the older brother wouldn’t tease him anymore.

When he came back for his next session, he commented on being much happier about his talking at home, and felt the activity had been really helpful. His Mum was very positive about it too, and proud of how he had managed to speak up for himself and be able to say how other people could help him with his talking.

Our thanks  to Kirsten Taylor, Speech and Language therapist for sharing this powerful story