Don’t Leave Us Out! Listening to Children with Multiple and Profound Disabilities Nick Pike Principal Lecturer in Social Work Faculty of Sport, Health and Social Care University of Gloucestershire

Why is listening to profoundly disabled children difficult? ► Discrimination: profoundly disabled children are assumed to be incapable of communicating or having nothing important to say ► Adult control and surveillance: leads to domination of child, limitation of choice and taught helplessness ► Difficulty: it can be time consuming, challenging and difficult to listen to, understand and respond to a child with little or no verbal communication

Communication Sin Bin

Foundation Principles for Social Work Practice ► Children are motivated to communicate to control their world ► Children are ACTIVE participants in learning about the world around them ► All behaviour is potentially meaningful or communicative ► Individual children have their own special way of communicating and we need to discover what it is. Like strangers in a new country we have to find out the language and learn to use it. ► Communication is our responsibility, not the child’s!

Indicators of Communicative Intent ► Alternating eye gaze: where a person looks at you, then at something or someone else, then back to you again ► Clear waiting for a response ► Active seeking of proximity: a person moves to follow or sit close to someone ► Systematic variation in behaviour: if you fail to respond, the person will repeat, elaborate or change the behaviour ► Persistence and intensity of behaviour: if the person repeats the same behaviour in different situations and with different people, and seems to do so forcefully ► (Grove 2000 p. 5)

Seeking Understanding

Communicative Partner ► “Children acquire language and other cultural tools with those who are more competent. These people guide, assist and scaffold at the right developmental level” (Vygotsky 1978) cited by Katherine Buckley and Claire Latham (2006) ‘Developing a Communication Book for Eye Pointing Children’ (Oxford, ACE Centre) centre.hostinguk.com centre.hostinguk.comhttp://ace- centre.hostinguk.com

Knowledge, skills and attitudes you need ► Patience and lots of time ► An ability to carefully observe a child’s behaviour and think about what they might be trying to communicate ► An ability to listen to others in the child’s network and learn how they make sense of the child’s communication (they may not be right!) ► A good working knowledge of child development (especially language development)

Basic Principles of Communication ► Be available ► Be observant and tuned in ► Be responsive ► Relax and enjoy the interaction ► Be warm and playful ► Celebrate responses and new behaviours ► Allow pauses ► Let the person lead (do not dominate!) ► Create and repeat familiar, mutually enjoyable, interactions ► Extend your response to become turn-taking and other new developments (Nind and Hewett 2000 p.16)

Useful Approaches 1 ► Affective Communication Assessment (Coupe O’Kane and Goldbart 1998)  an observational assessment is undertaken with a carer/advocate.  this consists of asking how a child indicates ‘I like this, I do not like that’ by introducing activities to a child and observing and video recording the responses.  then you observe how those responses are displayed in the child’s natural environment

Useful Approaches 2 ► Intensive Interaction (Nind and Hewett 2000; 2005)  this approach is based on natural parent/child interaction, and involves observing and responding to the natural communication of the child;  then developing the fundamentals of communication in a relaxed, responsive manner that encourages the child to set the agenda

Useful Approaches 3 ► Eye Pointing and Communication Boards (Buckley and Latham 2006)  Based on a child’s natural tendency to look towards things they are interested in and to look away from things they are not interested in  Can be developed into a system for identifying basic choices  Also can be linked with communication boards with a range of pictures, symbols etc. to extend vocabulary

Fringe VocabularyCore Vocabulary Recurrence Possession Rejection Non - existence Action Agent Object Attribute Language Functions

Useful Approaches 4 ► Symbols and Stories  Life Story Books: enable a child to ‘tell their story’ using pictures, symbols, video material etc.  Story Books and Boards: do the same thing but restricted to particular topics/issues  Happy/Sad images “ how do you feel when” help link feelings to events  Symbols and Pictures: represent issues and choices to the child

Advocacy ► Advocates are an essential part of the support network for severely disabled children and young people ► Independent of service providers they befriend and support young people, help to make choices and to represent their views in decision making forums ► They may be crucial in interpreting the wishes and feelings of a child where a complex decision is required.

Acknowledgement ► All cartoons are copyright and reproduced from Jenny Morris (2002) A Lot to Say! A guide for social workers, personal advisers and others working with disabled children and young people with communication impairments (London, Scope Research Department)

Useful Resource Packs ► ‘I’ll Go First’ – pack enabling children to participate in formal reviews published by the Children’s Society. Available from: ► ‘How it Is’ - an image vocabulary for children about feelings, rights and safety, personal care and sexuality published by the NSPCC. Available from ► ‘Listen Up’ - a toolkit of multimedia resources to help children and young people with a learning disability complain about the services they use published by Mencap. Available from

References and Reading ► Katherine Buckley and Claire Latham (2006) ‘Developing a Communication Book for Eye Pointing Children’ (Oxford, ACE Centre) ► Judith Coupe O’ Kane and Juliet Goldbart (2 nd ed. 1998) Communication Before Speech (London, David Fulton) ► Nicola Grove (2000) ‘See What I Mean’: Guidelines to aid understanding of communication by people with severe and profound learning disabilities (London Mencap/BILD) ► Jenny Morris (1998) Don’t Leave Us Out: Involving disabled children and young people with communication impairments (York, Joseph Rowntree Foundation)

References and Reading ► Jenny Morris (2002) A Lot to Say! A guide for social workers, personal advisers and others working with disabled children and young people with communication impairments (London, Scope) ► Melanie Nind and Dave Hewett (2000) A Practical Guide to Intensive Interaction (Kidderminster, BILD) ► Melanie Nind and Dave Hewett (2 nd ed. 2005) Access to Communication (London, Jessica Kingsley)