Tools and Approaches for Involving Children with learning disabilities and little or no verbal communication in

Inspection

An MSc action research project carried out by Sam Sly 2005/06

No “Fix all”

• No one miracle tool• No one approach that will work with

everyone• Tools and approaches in this project

not designed for communicating with people with profound learning disabilities or autistic spectrum disorder

Why this project?

• Identified by CSCI User and Public Involvement Team as needed

• The literature review showed that the most needed and least researched area was gaining views of children with little or no verbal communication

• Personal interest

How did the project work?

• Small project (3 inspectors and one care home for children with learning disabilities, aged 8-19)

• All the children, staff, inspectors and the manager of the home were participants with an equal say

• 9 children acted as Peer Informants• 6 children were interviewed• Inspectors and staff met as focus groups

throughout the project to reflect and plan the next steps

How did we come up with the findings?

• Interviews with the children were video taped• Interviews with Peer Informant children, staff

and Inspectors after interviews were audio taped

• All the tapes were written up and themes emerged that were then confirmed by participants to be a true reflection of their views

• The tools were improved and modified throughout the project as they were tested out

The introduction and opt out tools

(Handout 1 and 2)

• Consent is crucial and sometimes difficult to obtain

• As inspectors we need to introduce ourselves and give information in ways that are understood

• Consent is a continual process, not a one-off statement

• Interviewees need to be able to opt in or out at any time

(Handout 3, 4 and 5)

“You wouldn’t go up to someone in the town centre on a Saturday morning, cold, and say “right I am going to talk to you about some of the most intimate details of your life” and then say “thanks very much, bye!” and expect to get anything now would you?”

“To be honest Providers have been very professional and very tolerant of us. It is appalling that we are being sent in to inspect without the ability to communicate”

Comments from Inspector during project

The Communication Information Tool

(Handout 6)

• Must be familiar with person’s preferred mode of communication when planning the interview

• Useful to know something about the person in relation to the topics you are going to talk about

• Can prove evidence of how well the staff know the communication needs of the person

Vocabulary

• A “language” the person understands• Age appropriate and culturally

appropriate• Not restricted by negative perceptions

and prejudice• Give opportunities, going beyond the

life experiences of the person• Be relevant to that person• Be interesting to them!

Peer Informants

• Not there to represent the views of the people you are going to use the vocabulary with

• Own views as people with similar life experiences

• Shared communication needs• Similar outlooks and life experiences• But can give their views more fully

Topics

• Food• Outdoor activities• Indoor activities• Staff support

Questions prompt sheet

(Handout 7)

• Complex

• Subjective

• Very personal

• Closed “Yes” or “No” answers

- one subject, one question at a time

- clear, concise, interesting, understandable

- “open” style to enable decision making and choice

Talking MatsTM Information

• Joan Murphy & Lois Cameron for AAC Research Unit, Stirling University

• Talking Mats & Learning Disabilities Pack

• Talking Mats & Frail Older People Pack• AAC Research Unit, University of

Stirling, Stirling FK9 4LA• 01786 467645 info@aacscotland.com

My Contact Details

• Sam Sly Regulation Inspector• CSCI• Linhay Business Park• Ashburton• TQ13 7UP• 01364 651 800• Samantha.Sly@csci.gsi.gov.uk