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How I help people move on (1):

Steering the way home


When a group of people with severe and profound learning disabilities were referred for support with preparing to move house, speech and language therapist Sue Martin and drama therapist Magda Pearson took inspiration from the ideas of Keith Park and responded in a creative and dynamic way.
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s a speech and language therapist and drama therapist working in the Camden Learning Disabilities Service, we were asked by the manager of a local day service to develop a meaningful and interactive way to convey the concept of moving house to a group of people with severe and profound learning disabilities. Transition can be a key stressor for people with complex needs and typically they have limited opportunities to express their choices / wishes (May, 2000). We wanted to provide an alternative intervention that would prepare the group for their move to a new house by supporting them to have a physical and creative experience of what moving house involves. To do this we based our projects aims (figure 1) on the principles of Keith Parks Story Telling work (2002). Our aim was that through acting out the tasks and the feelings of moving house, the group would have memories and experiences that they could relate back to during and after the move. Our hope was that this would provide familiarity with an experience to help aid understanding and reduce anxiety during a difficult time of transition. The development of the project involved the creation of communication profiles, writing the story, developing objects of reference and switches.
Figure 1 Aims of the group 1. To support the group and individuals to understand the move 2. To develop understanding and use of objects of reference, and use these to initiate interactions 3. To develop use of switches to initiate interactions between group members 4. To engage service users to participate in a creative group activity 5. To encourage and develop interaction skills such as turn taking eye contact use of switches 6. To provide a safe and therapeutic space for expression of emotional responses to the move 7. To provide a tangible experience relating to the move.

l to r Magda and Sue Communication profiles were drawn up for each member of the group. Two profiles were completed for each service user, one by their key-worker at the day centre and the second by their key-worker at home. Once these were completed (example in figure 2) we compared the two; it was interesting to note that in each environment the service users way of expressing themselves was similar in terms of their likes and dislikes, their responses to objects and activities and their emotions. The consistency in the profiles from both environments enabled us to feel confident that we had a good understanding of each service users level of communication. The information provided by the communication profiles and the knowledge of the staff team demonstrated that the general understanding was at a one to two key idea level. The profiles also gave us a good understanding of how each service user communicated. There were nine group members. Three had some expressive language skills, mainly using learnt phrases and one-word phrases, while the other group members communicated non-verbally at an intentional level. The levels of motivation to interact with others varied.
Figure 2 Sample completed profile Object of Cup, plate, suitcase, sensory Reference visual stimulation/tactile objects Communication Vocalisations (vary according to mood), leads people to object Likes Open spaces, outside spaces, quiet, walking Change Has had negative experience in the past. When he goes on holiday takes a couple of days to orientate himself. Understanding Limited of Time

We identified six stages of the move (figure 3). Together we wrote a four line verse for each of these stages and set them to a call and response rhythm (Park, 1999). We kept the language simple and accessible, leaving the rhythm, gesture, signing and objects of reference to engage the service users and relay the meaning of the story (figure 4, p.24).
Figure 3 The six stages of moving. 1. Packing boxes 2. Packing suitcases 3. Packing things onto the van 4. Getting onto the bus 5. Arriving and opening the front door 6. Unpacking and settling in.

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Figure 4 The story SWITCH; Phweeee Were all moving house today Lets get started; theres lots to do. Wrap our things up, pack our boxes. This is such hard work, phweeeee SWITCH: Clink, clink, clink Time to fold and pack our clothes now, Into the suitcases they must go. Push and squeeze to lock the suitcase, Sit on it, all push now, clink, clink, clink. SWITCH: Goodbye Time to get going, pack up the van, All of the boxes, the suitcases to, The van is packed, close the front door. Leaving [NAME OF HOUSE]. Lets all say goodbye! SWITCH: BEEP, BEEP! Now its our turn, get on the bus, Seat belts on, were ready to go. Through the streets and roads were driving Were all wondering Are we there yet? beep, beep SWITCH: Creak Turn in to the drive (road), we have arrived. [NAME OF NEW HOUSE] is our new Home Off the bus take a look around, Slowly, carefully open the door. creak SWITCH: Hurrah! So here we are, unpack the van, Boxes, suitcases into the house Find a place for all of our things Life at [NAME OF NEW HOUSE] begins. Hurrah! Figure 5 The Objects of Reference Verse Theme Object of reference Reason To represent the house The ribbons were attached to make the suitcase more tactile and engaging The front door of this house was blue To represent the bus Material captured attention because it reflected light and sparked; its tactile nature gave them something to engage with physically To represent the new house 1 Packing of non-personal items Large walk in box 2 Packing of personal items Suitcase with ribbons attached 3 Current home Large piece of silk blue cloth 4 The journey Steering wheel, long pieces of ribbon attached 5 Arriving at the new house Large textured gold cloth 6 Settling in Large walk in box, draped with gold cloth

Increase participation

The communication profiles informed our choice of the type of objects of reference that would be used to represent the key ideas of each verse (figure 5). By identifying objects and materials that would motivate and engage group members we hoped to increase their participation in the telling of the story. While the primary function of an Object of Reference is as a communication tool (Park,1999) that is usually developed for an individual service user, we developed the objects of reference for a group (Jones et al., 2002). Additionally, we made our objects of reference oversized to physically reflect the action held within the verse - for example we used a steering wheel with ribbons tied to it to represent the bus (figure 6). The wheel was held by a service user standing in the centre of the circle and the other service users took and moved the ribbons as the verse was sung. The objects had different therapeutic functions for the speech and language therapist and the drama therapist. We found that we had to spend some time defining how we would use them within the session. From the speech and language therapy perspective, objects of reference are viewed as a means to support an individuals understanding, and their ability to express themselves and make choices. Nominated objects are used to represent a person or an activity. In drama therapy objects are used more spontaneously. They aid interaction and give opportunities to

project feelings and act out expressions and emotions. The flexible exploration of objects exercises choice, independent improvisation and may lessen the stress produced by intensive direct interactions with another person (Chesner, 1994, p.143). From Magdas point of view it was felt that these opportunities might be lost in the structured use of nominated objects. After discussion we felt that focusing on improvisation could affect the group process and be intimidating for individuals, particularly in such a short-term piece of work. We agreed to use the objects primarily as objects of reference to develop an understanding of the concept of the move. In this sense some flexibility was lost but service users were still able to use the objects to exercise choice and they were actively used as props within the session. We pre-recorded sounds, such as phweeee (see figure 4, The Story), onto BIGMack switches to be used in conjunction with the objects and to accompany the opening and ending gesture of each verse. These were used to give individuals a voice and encourage them to start and finish the action.

Clear signal

The sessions were held in the main activity room so it was important to create a transformation from usual space to therapy space. We achieved this by simply moving the chairs away from the walls into a circle. The circle focused the attention into the therapy space and encouraged service users to observe and acknowledge each other. Changing the physical appearance of the space also gave service users a clear signal that the session was about to start. Service users with this level of disability are not always given the opportunity to express their choices and are often discouraged from choosing not to participate. Within our session we allowed space for movement within the circle and clear opportunities for leaving. It was important that service users were able to make a choice about whether or not to participate. A repetitive and rhythmical beginning and ending chant welcomed and acknowledged each participant to the group. This was an important time for everyone to be seen and

recognised. The calling of each person by name (including drama therapist, speech and language therapist and day centre staff) encouraged responses and participation even from those whose motivation to interact with others was very limited. For example, Robbie entered the room when we had been told he probably wouldnt join in, and Mary uncharacteristically came to the centre of the space to say hello. The sessions were well received, energetic and motivating. Many of the service users grew in confidence and we were able to observe increased levels of participation, such as engaging with and responding to the rhythm by dancing, rocking and clapping. responding to intonation of words and repeating back phrases and sounds. spontaneous use of objects of reference including individuals walking into the box without any prompting, and individuals getting up independently to join other people in the box. independent use of the BIGMack switches. (Although we dont feel that this indicated an anticipation of the beginning or ending of the section, the switches enabled service users to have a voice and initiate sounds within each specific section.) We used two methods to measure and record each individuals participation and responses: observation sheets and video. We chose to adapt The Object Related Scheme Assessment Procedure (ORSAP) (Coupe & Levy, 1985). The ORSAP uses a rating score that allows for a consistent, reliable way to measure how each individual responded, for example 1 = no response and 5 = great response/interaction. Our adapted form is available at www.speechmag.com/ Members/Extras. After training the intention was that weekly observation sheets would be completed by the same member of staff. Sue was to rate a different service user each week to allow for some inter-rater reliability. As well as completing the rating scores, any additional comments could also be recorded. Due to the demands and everyday practicalities of the day centre, it proved to be difficult for the members of staff to observe and record the responses of the same service user each week. These variations made it

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Figure 6 Steering wheel with ribbons

difficult to use the ratings as validated data, but the observation sheets did demonstrate that each service user made significant progress in their communication and interaction. Magda made her own observations and notes to guide her work. In addition the sessions were filmed and played back to the service users. This use of multi-media was usual practice within the day centre to support service users understanding of an activity. The process of gaining consent to use video as external professionals took a lot of effort but it was worthwhile because it also made it possible for us to observe and record progress made by individuals at a later date. We ran a weekly, hour long session over a period of 12 weeks at the day centre. Magda then carried out some transitional work based on the storytelling techniques. This was done at the service users home during and after the move. Techniques used to achieve a clear ending included continued use of the rhythm and song, adaptation and breaking down of the objects (for example each service user chose a ribbon from the wheel and this was cut off and then used in movement work), physical exploration of the new house (touching the walls, floor, furniture) and re-writing the story to incorporate and re-enforce good-bye.

a closed group, which would have only included service users who were involved in the move and not other members of the day centre. Although it was not possible to measure clinically the benefits of the story telling project, we believe that through participation in the sessions the service users were more familiar with the concept of the move. This was reflected in our observations that the service users enjoyed the sessions and developed their communication skills along with their sense of group and peer interactions. They were also energised and motivated, had reduced levels of anxiety and had fewer challenging behaviours than expected. During the three months after the move, staff at the day centre and home observed that the levels of anxiety were kept to a minimum. Some of the service users did present with challenging behaviours but the number of incidents thought to be directly connected to the move were less than anticipated. Overall the majority of service users coped well with the move. Encouragingly, the day centre staff were able to reflect on the success of this project and made a second referral to Magda to strengthen the service users understanding

of the changes and address any post-move anxiety and behavioural issues. By taking inspiration from Keith Park and his story telling framework we had the opportunity to extend and share the skills of our individual disciplines and to explore a more creative and dynamic way of approaching referrals. This was an innovative learning experience for us and the service users. We have found that developing a project like this has given us increased confidence to work using less traditional methods, for example, Magda continues to use drumming, call and response and voice work at the beginning of new projects as this supports the service users to gel and to become familiar with each other and the structure of the session. We developed this project in response to a unique referral which demanded an innovative approach; however service demands and limited opportunities for gaining funding for drama therapy have made it difficult for us to run further projects using these ideas. Sue Martin is a Highly Specialist Speech and Language Therapist, Camden Learning Disabilities Service (Speech & Language Therapy Service, Islington PCT), e-mail Sue.Martin@islington.gov.uk. Magda Pearson is an Independent Drama Therapist, e-mail magdap73@hotmail.com. The observation form based on Coupe & Levy (1985) is available at www.speechmag.com/Members/Extras.

Acknowledgements

We would like to extend our thanks to the service users who took part in this project and the staff team at Lilestone Street Day Service, Westminster City Council. Identifying details of clients have been removed. REFLECTIONS DO I ENSURE GROUPS HAVE A DEFINED THERAPY SPACE, CHOICE ABOUT PARTICIPATION AND CLEAR INTRODUCTIONS? DO I BRING DIFFERENT PROFESSIONAL PRIORITIES INTO THE OPEN AND NEGOTIATE A SHARED PATH? DO I USE THERAPY TO SOW THE SEED OF MEMORY IN PREPARATION FOR NEW EXPERIENCES?

Challenging

The wide range of levels of communication skills and motivation of the service users made this a challenging project to develop and run. We felt that the project was a success because: the aims and objectives (figure 1) were met we had joint planning with day services and other disciplines it was a creative alternative to regular intervention we had positive reactions from the service users we had positive feedback from staff. We also consider that the project would have benefited from: more than 12 sessions to run it a more flexible timeframe to enable us to work with colleagues in clinical psychology to develop outcome measures more planning time more staff training more consistent availability of staff

References

Chesner, A. (1994) Drama therapy for People with Learning Disabilities. London: Jessica Kingsley. Coupe, J. & Levy, D. (1985) The Object Related Do you wish to comment on the impact Scheme Assessment, Mental Handicap 13(1), this article has had on you? Please see pp.22-24. guidance for Speech & Language TherJones, F., Pring, T. & Grove, N. (2002) Developapy in Practices Critical Friends at www. ing communication in adults with profound speechmag.com/About/Friends. and multiple learning difficulties using objects of reference, International Journal of Language & Communication Disorders 37(2), pp.173-184. May, D. (2000) Transition and Change in the Lives of People with Intellectual Disabilities. London: Jessica Kingsley. Park, K. (1999) Whose needs come first?, Speech & Language Therapy in Practice Summer, pp.4-6. Park, K. (2002) Switching on to Shakespeare: A Midsummer Nights Dream, Speech & Language Therapy in Practice Spring, pp.4-6.

Resource

BIGMack switches are available from www.thesensorycompany.co.uk


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Reprinted from www.speechmag.com

THE MOVE: OBSERVATION SHEET

Name: Session No.

Observed by: Date

1 = not at all.
Not at all 1. Awareness Demonstrating any kind of awareness of the sights and sounds of the activities Comments

5 = very much
very much

2. Anticipation For example, demonstrating an anticipation of the loud noises (eg beep beep,) that begin and end the activities Comments

3. Turn Taking Participating, in any way, in the turn-taking call and response structure of the activities Comments

4. Showing self The person demonstrates a this is me behaviour to gain someone elses attention, for example, smiling , laughing, eye contact, and vocalising. Comments

5. Showing objects This is a look at this, attention-sharing behaviour. Comments

Based on The Object Related Scheme Assessment Coupe, J. & Levy. D (1985) Martin, S. & Pearson, M. (2009) Steering the way home, Speech & Language Therapy in Practice Autumn, pp.23-25

Reprinted from www.speechmag.com

6. Giving objects In contrast to the showing objects behaviour 1 2 3 4 5

Comments

7. Seeking physical proximity Moving, or turning, towards another person to indicate intention or desire to communicate. Comments

8. Gaze alternation Looking from an object to someone else or vice versa as a means of sharing attention Comments

9. Joint attention Two or more people are intentionally looking at the same thing (or person) at the same time. Comments

10. Declarative pointing Pointing to an object, while looking at the communication partner before, during or after the point, to indicate look at that Comments

11. Engagement 1 Comments 2 3 4 5

General Comments

Based on The Object Related Scheme Assessment Coupe, J. & Levy. D (1985) Martin, S. & Pearson, M. (2009) Steering the way home, Speech & Language Therapy in Practice Autumn, pp.23-25