Evaluating the impact of communication passports for people with Intellectual and Developmental Disabilities (IDD) living in adult social care

Introduction

At least 45% of people with learning disabilities experience serious problems with communication. Communication passports are a tool for supporting people who cannot easily speak for themselves by making information from formal assessments easily accessible to all. A good communication passport accurately describes communication strengths and needs, and contains information about the person in a very clear way.

Parents and practitioners provide positive evaluations, however the majority of studies looking at communication passports have focused on descriptions rather than evaluations of use, and have rarely sought views from people with intellectual and developmental disabilities (IDD).

Objectives

This study aimed to explore the use of communication passports and the quality of communication in adult social care for people with IDD. It aimed to look at whether having a communication passport resulted in better communication.

Methods

Interviews about communication took place which were compared with assessed communication needs and observed communication and interaction.

The research team approached 24 services, supporting 224 people, of whom 53 were described (on the telephone) as being users of communication passports. Four services agreed to take part with support provided by five providers:

• A Local Authority residential home for up to 24 people
• Three residential homes, two providers, for 8, 5 and 5 people
• Supported living, up to nine people, direct care provided by two providers.

There were 29 service users in total, with 10 passport users. No participants were assessed as having the capacity to consent to take part in this research and so consultee views were sought. The study was unable to recruit participants who had passports of good quality.

Full data was collected on 24 participants. Three participants died. Two participants withdrew consent.

The research team:

• Interviewed 60 staff – the average length of the interviews was 24 minutes; they ranged from 11 to 31 minutes
• Interviewed five family members – the average length of the interviews was 31 minutes; they ranged from 25 to 35 minutes
• Interviewed (using Talking Mats®) four service users. Talking Mats is an interactive visual resource which supports people with communication challenges to express their views
• Received 28 completed questionnaires about individuals
• Observed for 24 individuals for an average of 40 minutes (ranging 15–60 minutes) to explore:
  – engagement in meaningful activity, communication and relationships
  – the quality of staff support
  – communication in use
• Looked at existing communication assessments in the files of the eight people who had them.

They carried out 18 communication assessments and had assessment data on 22 individuals. Communication assessments involved a combination of formal and informal assessments and were carried out by a speech and language therapist. These included some direct assessments (for example, asking people to point to pictures) and some checklists that were completed by staff.

Findings

• Communication passports in the study were generally poor; having one did not result in better communication.
• Having either a communication passport or assessment did not result in better agreement about communication skills.
• Staff overestimated service user comprehension skills.
• Staff did not appear to see communication and interaction as part of their role.
• Adapted methods of communication were rarely observed, meaning in particular that service users had very limited access to information about what was happening in the future.
• Information from families about communication/interaction did not seem to be valued.
• Communication support did not appear to be targeted at those who experience the greatest communication challenges.