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In 2006, the Scottish Executive commissioned a review of the existing literature on the needs and experiences of people with communication support needs ( CSN). This review looks at how people with CSN engage with services and the barriers that they experience. It also identifies gaps in the literature and makes recommendations for further research. This document summarises the main findings of the literature review.

Main Findings

• 'Communication support needs' is a relatively new term which is used to encompass the needs experienced by people with communication difficulties associated with a range of disabilities. As defined for the purposes of this review, people with CSN have difficulties associated with one or more aspect of communication.
• Speech and Language Therapy referral data suggest that there is between 1 and 2% of the population at any one time with severe CSN requiring specific assistance to meet their needs and that as much as 20% of the population may experience some difficulties in communication at some point in their lives relative to the population as a whole.
• The evidence indicates that public sector service provision is not currently meeting the needs of people with CSN. Compared to the general public people with CSN are more likely to:
• be unemployed or employed at an inappropriately low level
• experience negative social interactions/communication within education, healthcare, criminal justice system, etc.
• be misjudged in terms of cognitive and educational level and in terms of mental health status
• be involved in the criminal justice system as both victims and perpetrators of crime
• have difficulty accessing the information required in order to utilise services
• live in socially deprived areas
• The specialised terminology and forms of language associated with health, criminal justice, financial services, etc. may be especially problematic for people with CSN.
• Particular difficulties are associated with transitions within and between services, where individuals with CSN face increased communication demands with unfamiliar people.
• There is a need for more training and education aimed at increasing awareness and understanding of CSN, promoting good practice in facilitating effective communication and challenging negative stereotypes and attitudes.
• Where initiatives have been implemented with positive results they tend to be limited geographically and linked only to specific aspects of a single service.

Background

This review was commissioned by the Scottish Executive in 2006, as part of its commitment to investigate the needs and experiences of people with CSN and to explore appropriate development of service provision for them.

Aims and objectives

The main aims of this study are to review the existing literature on the needs and experiences of people with CSN and to highlight the implications for service provision.

The key objectives of the study were to:

• Define 'Communication Support Needs' for the purpose of this review ¹.
• Identify the range of barriers to communication experienced by people with CSN and how this impacts on their use or non-use of services.
• Draw out the differences and commonalities experienced by all groups of people with CSN.
• Explore and analyse the literature relating to service providers' understanding of CSN and their ability to meet the needs of people with CSN.
• Identify gaps in the literature and make recommendations for future research.

¹ The review did not focus on those speaking English as a second language, or on issues associated with adult literacy or numeracy.

Method

The relevant literature was identified through systematic searching of online bibliographic databases and through the recommendations of subject experts.

Findings

Who has CSN?

People with CSN have difficulties with one or more aspects of communication. For example, someone with CSN may experience difficulty in producing speech, expressing ideas or understanding what another person is saying to them. Some CSNs may be easier to recognise than others. Thus CSNs that are related to problems in speech are more apparent to the public than CSNs associated with difficulties in understanding language.

A wide range of people may be classified as having CSN. Many are associated with conditions which are physical (cleft palate), sensory (hearing or visual impairment), cognitive (dementia or learning disability) or "medical" (laryngectomy or multiple sclerosis) in origin. Others such as specific language difficulties may have no known cause.

Speech and Language referral data suggest that there is between 1 and 2% of the population at any one time with severe CSN requiring specific assistance to meet their needs and that as much as 20% of the population may experience some difficulties in communication at some point in their lives relative to the population as a whole.

Experience of Services

The findings from the review are organised into a number of chapters reflecting the experiences of people with CSN within each public sector service.

Health and social care

In general, people with CSN report that they find it difficult having their needs met across the health sector. This may be especially true in primary care where the need for the individual to be able to communicate their needs themselves is paramount. Evidence reviewed points to a lack of awareness of the communication difficulties experienced by individuals with CSN and ways of overcoming these difficulties. The attitudes of healthcare providers may play a crucial role in the uptake of healthcare services by people with CSN. In one example, parents with learning disabilities reported a reluctance to access parenting support due because of their experience of negative attitudes of specialist staff. Findings of the review recommend that healthcare staff receive communication training to promote understanding of the complex needs of individuals with CSN and provide knowledge of ways to overcome barriers to communication in the healthcare context.

Education

The evidence suggests that children with CSN often under perform in school, which is a highly verbal environment. They are also at greater risk of bullying and alienation due to a lack of peer understanding. Transitions through the education system can be challenging for children and young people with CSN. For example, moving to secondary school can be particularly problematic as the children encounter a wide range of different teaching styles and teachers with varied awareness and experience of teaching children with CSN. The problems tend to be exacerbated as the young people move out into further and higher education. Once someone has left school they may lose existing sources of technical support and be unaware of the career or further education options available. Existing literature suggests that planning for transitions should begin well in advance of their leaving school. The reviewed literature recommends consulting children with CSN when addressing their needs within the education system. For children with CSN to benefit fully from the education system, there should be collaborative working between the different professionals involved in education.

Employment and Financial Services

Many people with CSN encounter difficulties entering the labour market due to lack of experience and/or confidence in their communication skills. The evidence reviewed suggests that of those who have been successful in finding employment many are likely to have a lower level of CSN and tend to be employed at a level below their abilities. The literature suggests that although employers appear to be supportive, they often fail to meet the needs of employees due to lack of awareness and understanding of CSN. Those not in employment experience difficulties accessing financial assistance, especially advice regarding benefits. They commonly have difficulty understanding and completing forms. The available evidence in the review recommends person centred planning and the use of social networks to support individuals with CSN in employment and promote awareness of their needs. To ensure that those out of work receive adequate financial support, the benefits process needs to be more transparent, both in terms of application and decision making.

Criminal Justice

The evidence indicates that a high proportion of people in juvenile offenders' institutions and prisons have CSN, whether in oral or written language skills. People with CSN are also more likely to be victims of crime than the population as a whole. The legal process, which can be challenging for the general public, is likely to prove particularly problematic for people with CSN. This is made worse by a lack of awareness and understanding of CSN by the professionals involved in the criminal justice system. In turn this can lead to inaccurate judgements on the cooperativeness of individuals with CSN and the reliability of the information they provide. Effective communication may be ensured by the introduction of pictorial communication aids to legal settings. Individuals with CSN may benefit from the presence of an appropriately trained advocate in legal settings. Lastly, criminal justice professionals would benefit from specialist training in identifying individuals with CSN and strategies to overcome barriers to communication.

Experiences of Other Services

The limited evidence available in the areas of housing, travel and leisure indicate that adults living alone with CSN involving learning disability were more likely to live in areas of social deprivation. In terms of travel a large number of people report difficulties in using public transport. Adults with CSN related to stammering report avoiding leisure activities that involve social interaction. In some cases individuals who experience CSN later in life as a result of stroke described a loss of self identity, making them withdraw from former leisure activities.

Conclusions and Recommendations

The term CSN covers a wide range of people with different disabilities and with varied levels of needs. Many of the needs experienced by people with CSN are comparable across the different disability groups. Despite this, and despite the relatively large numbers of people involved, communication needs are rarely recognised by those providing services.

The review has identified a number of prominent gaps in the literature:

• Public awareness and understanding of communication disability and public attitudes towards people with communication support needs
• The costs of communication support needs to the individual and to society as a whole
• The relative value of an enhanced "communication accessible" model of service delivery across sectors

Specific gaps in the evidence base related to aspects of service delivery include:

• Children and young people's experience of CSN within the educational context
• Transition periods and attitudes of criminal justice professionals
• Attitudes of criminal justice professionals
• Housing (problems identified include limited choice, lack of privacy, abuse and exploitation, increased probability of social deprivation)
• Travel (problems identified include difficulty accessing and understanding information, negative attitudes, anxiety associated with crowding)
• Leisure (problems identified include communication demands of some leisure activities inhibit involvement by people with CSN, limited availability of appropriate group activities)
• Financial services (problems identified include communication demands associated with complex documentation when accessing services/benefits, staff may lack appropriate training)

The findings of the review indicate that there is a clear need for service providers to improve their understanding of CSN in order to be sensitive to the very different needs of people with CSN. There is a need for CSN training to be administered to all public sector staff. While there are examples within the literature of communication training packages within specific public sectors addressing the communication needs of specific disability groups, there is no standard package that can be implemented across services, focusing on training for knowledge and understanding of CSN as one group.

Recommendations for Further Research

The findings of this review indicate three lines of enquiry for future research. Consultation with a group of people with CSN is recommended for setting up and monitoring of each research project.

Study 1. Expectations and improvements for service users with CSNs.

The first line of enquiry would explore the experience of the full range of services of people with CSN in Scotland.

Study 2. Public attitudes to and understanding of people with CSNs

The second strand of research would explore public attitudes towards CSN across Scotland to address ignorance and prejudice associated with CSN.

Study 3. Developing and evaluating a communication friendly environment across local services.

The final research project would involve the implementation and evaluation of a Communication Access package across all services in a pilot location. This would include publicity, training, and the availability of support workers related to specific aspects of services.

If you wish further copies of this Research Findings or have any enquiries about social research, please contact us at:

Scottish Executive Equalities Research

Email: socialresearch@scotland.gsi.gov.uk
Website: www.scotland.gov.uk/socialresearch

If you wish a copy of "Communication Support Needs: A Review of the Literature" the research report which is summarised in this research finding, please send a cheque for £5.00 made payable to:

Blackwell's Bookshop

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Email: business.edinburgh@blackwell.co.uk

This document (and other Research Findings and Reports) and information about social research in the Scottish Executive may be viewed on the Internet at: http://www.scotland.gov.uk/socialresearch

The site carries up-to-date information about social and policy research commissioned and published on behalf of the Scottish Executive. Subjects covered include transport, housing, social inclusion, rural affairs, children and young people, education, social work, community care, local government, civil justice, crime and criminal justice, regeneration, planning and women's issues. The site also allows access to information about the Scottish Household Survey.

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