Researchers based at the University of Bristol are examining the support for children with complex communication needs – in both mainstream and special schools – to express their views and make decisions for themselves.
Introduction This article is based on findings from a survey of special and mainstream provision in England, which formed the first phase of the Participation in Education (PIE) project. This study developed from a partnership between the University of Bristol, Bristol Local Authority and the West of England Centre for Inclusive Living. It is based on a social model of disability and on the assumption that disabled children may be excluded from involvement in decision-making because we lack knowledge about how to achieve this.
The aim of the PIE project (funded by the Esmée Fairbairn Foundation) is to explore approaches for including disabled children aged 7-11 with little or no verbal communication in formal decision-making in education – eg when Individual Education Plans (IEPs) are reviewed and targets set, and also in other areas such as decisions about secondary schools and involvement in school councils. This aim reflects the current emphasis in the Every Child Matters agenda on listening to the views of children and young people (DfES, 2003; DfES, 2006).
Questionnaires from 112 special and mainstream schools were analysed (representing 46% of local authorities in England). Three quarters of the respondents were from special schools and responses from 17 mainstream primary/junior schools and 11 units/classes in mainstream schools were received. The average number of children in the survey schools with little or no verbal communication was 14.
Findings and issues that emerged from the survey
Strategies, equipment and ICT
Unsurprisingly, a high percentage of schools (96%) reported the use of a range of strategies, equipment or ICT to support children with little or no verbal communication. Among the most frequently cited were the Makaton and Signalong signing systems; Rebus symbols developed by Widgit; and a group of communication aids known as VOCAs (Voice Output Communication Aids) that included BIGmack, Dynavox, 4Talk4, Tech/ Talk 8 and Tech/Speak 32. Various computer-related equipment was listed, such as switches, specialist keyboards and joysticks; and the most commonly mentioned software programs were Clicker 4/5, Writing with Symbols and BoardMaker. A varied and creative range of strategies was used in the classroom and at an individual level including the use of Passports, cued articulation, specific positioning and visual timetables.
Involvement of children with little or no verbal communication Half of the schools indicated that the children with little or no verbal communication were involved in decision making at school, with a further 36% sometimes being involved. Fourteen per cent of schools said that the children were not involved, with several commenting that either the children were too young or too profoundly disabled, or that they were hoping to improve on this in the near future.
Fifty one per cent of the survey schools indicated that children were involved in their annual reviews. A range of strategies for involving children with little or no verbal communication was indicated: from the use of video, symbol supported discussion and the development of Visual Annual Reviews, to simply making sure that the child was aware that the review was happening.
Just over half (53%) of schools reported that children with little or no verbal communication were involved with their IEPs, but over a third of these qualified this by indicating that the children were involved where appropriate, or if they were able to contribute meaningfully. When asked in what ways the children were supported in meetings to ensure that their views were taken into account, the majority of respondents mentioned the use of staff (especially those who knew the child very well), the use of ‘child friendly target sheets’ and choices being given to children about which targets they wanted to achieve. Parents were also key to this, as well as the use of signing, symbols and Alternative and Augmentative Communication (AAC). About a third of respondents indicated that the children’s views were formally recorded in meetings, but only 10% reported that the children’s views were always recorded in an accessible way. There was a clear indication that many schools wanted to improve their practice in this area.
Difficulties and ways forward
Schools were asked about situations in which it is more difficult to involve children with little or no verbal communication. The range of responses was extensive, the most frequent of which referred to difficulties in involving these children in class discussions and circle time activities. Another frequent response referred to difficulties where abstract or complex decisions or choices needed to be made. The respondents were asked what situations would make wider involvement of children with limited verbal communication possible. The two most common (but perhaps predictable) answers referred to the necessity of one-to-one support and the vital importance of adequate time for preparation.
Training
Although a number of respondents had been involved in training about the Picture Exchange Communication System (PECS) and in the use of Makaton, a relatively high proportion (41%) had not received any training about strategies to involve children with little or no verbal communication in their education, and a significant number indicated that they would like to see improvements in this area.
Protocols and guidelines
Schools were asked whether or not they used or were aware of any national, local or school protocols or guidelines on involving children with little or no verbal communication in decision-making. No resource was mentioned more than five times. A third of schools were not aware of any protocols or guidelines, 15% of schools were able to name at least one national resource, 15% of schools had their own policies or guidelines and 10% named local resources. These responses indicate low levels of awareness and availability of relevant protocols and guidance, suggesting a lack of consistency across England.
Advocates
The schools were asked about their use of independent advocates with children who have little or no verbal communication. Half the schools indicated that they use advocates with these children. However, when asked to give details, 43% commented that the advocate was the child’s teaching assistant, support staff member or teacher, therefore not truly independent. A further 7% indicated that the child’s parent or carer acted as an advocate, which again suggests someone who is not independent. Three schools mentioned the use of advocates when working with looked after children, another school mentioned the involvement of an advocate during a police investigation, and another used an advocate to support a parent during an annual review meeting.
Current approaches used by schools and suggestions for improvement
The schools were asked to rate their current approaches on involving children with little or no verbal communication. It is encouraging to note that 69% of schools judged that they were either doing well or quite well, with a further 7% doing very well. However 24% of schools felt that they were ‘not doing well but improving’ or ‘not doing well’. In terms of developments in this field, schools identified a clear need for improvements in training (eg developing awareness and skills around choices and the use and delivery of ICT, AAC and communication aids). Other improvements included more opportunities and time for involving the children in decision-making.
Conclusions
It is clear from the results of this survey that a wide variety of often innovative and creative methods is being employed to involve children with little or no verbal communication in their education. However, it is also apparent that there are few consistent guidelines or protocols to support staff in this work and few opportunities for sharing practice. The levels of involvement of children with little or no verbal communication in meetings that directly concern them are relatively low and are indicative of the need for more consistency. Involving children with little or no verbal communication is a problematic area for many schools and it is apparent that a need for further research and training has been demonstrated. With an average of 14 children with little or no verbal communication in each of the schools that have responded to this survey, the numbers of children across England are clearly significant, and with an increasing awareness of equal opportunities entitlement and children’s rights this is an area that deserves serious attention.
Authors
Debby Watson and Beth Tarleton (Norah Fry Research Centre, University of Bristol); and Anthony Feiler (Graduate School of Education, University of Bristol).
References
1. Department for Education and Skills (DfES) (2003) Every Child Matters. Norwich: The Stationery Office.
2. Department for Education and Skills (DfES) (2006) Children’s Workforce Strategy: The Government’s Response to the Consultation. Nottingham: DfES Publications.