The Scottish Government

« Previous | Contents | Next »

Listen

EXECUTIVE SUMMARY

BACKGROUND

Communication allows us to express ourselves and to have our needs met, it affects the way in which we form our relationships, negotiate the classroom, get through interviews, hold down a job and interact with our families. Although most of us may experience slight difficulties with aspects of our communication when we are nervous or when we forget things, the fact is that we tend to take communication for granted and pay it relatively little attention. It is just something that we do like walking or eating.

However, there is a sizeable group of people, both children and adults, who experience difficulties expressing themselves and understanding others, such that it affects everyday functioning. These people are variously described according to the perceived cause of their impairment, for example from stroke or learning disability, or in terms of the specific nature of the difficulty that they experience, such as expressive language disorder or stammer. What they all have in common is some level of communication support need ( CSN). This review addresses the needs of this broad group of people and their ability to access a range of services.

It is difficult to be precise about the number of people falling within this group but, taking together referral data to speech and language therapists and the more conservative prevalence estimates, we would anticipate that there would be between 1 and 2 % of the population at any one time with such severe communication support needs that they need specific assistance in order to have their needs met. There is a much larger group, perhaps up to 20% of the population, who may experience some difficulties with communication at some point in their lives relative to the population as a whole. Although these figures are drawn from a number of sources and refer to a number of different countries it is reasonable to assume that they will be true for Scotland as they are for other countries.

One of the key features of this group is that, unlike those with more visible disabilities, their difficulties are less apparent and less easily recognised by the public. It is often difficult for the general public and service providers, when interacting with people with CSN, to appreciate the nature of their experiences, and this can lead to false assumptions about the person's disposition, intelligence and mental health. Associated with this is the inherent difficulty that many people with CSN have experienced lobbying for their needs within the political system. All too often they have to rely on the intermediary role of those in the voluntary sector and others who speak on their behalf.

THE REVIEW

Recent policy within Scotland has focused on a commitment towards a more comprehensive provision of services that meets the needs of individuals with communication support needs. This provision should be informed by robust research that links the needs and experiences of this group with policies underpinning service delivery. It was felt by the Scottish Executive that policy with regard to CSN at the time that the present project was commissioned lacked coherence. Therefore a literature review of communication support needs across all public sector services was commissioned by the Scottish Executive in 2006. This review explores how people with CSN engage with services. The review is set within the context of the Education (Additional Support for Learning) (Scotland) Act (2004) and the Adults with Incapacity (Scotland) Act (2000) in Scotland. The Education (Additional Support for Learning) (Scotland) Act (2004) requires that extra provision should be put in place for children and young people who have additional support needs because of a variety of reasons such as bullying or behavioural problems, in order for them to fully benefit from the education system. Under this Act education authorities are responsible for identifying and meeting the needs of these children and young people. Other agencies such as health and social work will assist the local education authority in providing coordinated support plans to overcome their barriers to learning and accessing services. Coordinated support plans are long term strategies involving various agencies to ensure that the child or young person achieves their learning objectives and enables them to move smoothly through transitions periods such as leaving school. This legislation has specific implications for children with communication support needs and their management within the classroom. The Adults with Incapacity (Scotland) Act (2000) allows other people to make decisions regarding the finances and property of adults who have poor mental health or communication skills when these adversely affect their decision making skills. Under the act, all decisions made on behalf of the adult with impaired capacity must benefit the adult by taking on board the adult's wishes and desires or those of their primary care giver or nearest relative. Any decisions made should promote the use of existing skills or growth of new skills without imposing too many boundaries on the individual's freedom. Again at the root of this legislation is the need for the individual to communicate their intention and those with communication support needs are, by definition, likely to experience particular difficulties in this area.

The aims of the review are:

• to identify literature which illuminates the experiences of people with communication support needs,
• to identify the barriers that people with communication support needs experience in society and ways in which it is possible to overcome these barriers
• to identify gaps in the available literature
• to make specific recommendations for a programme of research addressing issues arising out of the literature.

The review is based on a systematic review of the literature carried out using electronic data bases, a search of relevant websites and information provided by people working with people with communication support needs (practitioners, academics and members of the voluntary sector). The resulting documents come from a wide variety of sources.

FINDINGS

The findings from the review are organised into a number of areas reflecting the experiences of people with CSN. Those with a reasonable level of information include health and social care, education, employment, and criminal justice. Those with less, but nonetheless relevant, information include housing, travel and self expression and leisure.

There is evidence that healthcare, education, criminal justice, financial and social services are failing to meet the specific needs of people with CSN. People with CSN are likely to be disadvantaged on a number of fronts. By comparison with the general population they are more likely:

• to be unemployed or employed at an inappropriately low level

• to experience negative social interactions/communication within education, health care, criminal justice system, etc.

• to be misjudged in terms of cognitive and educational level

• to be victims of crime

• to be convicted of crime

• to have difficulty accessing information required in order to utilise services

• to 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.

Awareness and understanding of CSN is limited amongst both professionals and the general public. 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. A number of initiatives have shown positive results in improving the ability of people with CSN to access and benefit from services, but these tend to be localised geographically and linked to small parts of a single service.

Specific problems experienced by people with CSN and some solutions to these problems in the areas covered by the review as follows:

Health and social care

Problems identified

• Healthcare services are still failing to meet the needs of individuals with CSN.
• In spite of initiatives to improve the communication skills of healthcare staff, their knowledge and understanding of CSN may be limited; e.g, communication difficulty may be misinterpreted as a sign of limited intellectual function.
• Poor communication between healthcare staff and people with CSN may compromise accurate diagnosis and effective treatment. The specific vocabulary required to describe and understand symptoms and illness may be unavailable to people with CSN.
• There is an over-dependence on carers to report symptoms and perceptions of individuals with CSN.

Potential for improvement

• All staff working in healthcare would benefit from communication training which fosters awareness and understanding of the needs of CSN individuals.
• Simple changes to the physical environment may improve communication between people with CSN and their healthcare staff.
• All healthcare contexts ( i.e. hospitals, residential, home settings etc) and all aspects of service delivery (including written correspondence and instructions) could be improved by being considered in relation to CSN.
• A few initiatives are already under way that are focussing on developing the knowledge and skills of service providers. Some have very specific service users in mind (eg. the SENSE toolkit ) whereas others are working towards opening up communication access to services for people with a variety of communication issues (eg. The Communication Access Toolkit).

Education

Problems identified

• Many children with CSN are subject to bullying. Adults report negative interactions with school peers and teaching staff which impact on their adult lives.

• Children who rely on AAC technology (artificial speech aids) often have negative attitudes towards this mode of communication. Their difficulties increase in secondary school and beyond, due to multiple teaching and communication styles.

• Although access to further education for people with CSN has improved, some barriers still remain and transitions to higher education are difficult.

Potential for improvement

• Full integration within the education system requires measures to promote awareness and understanding of CSN amongst staff, peers and the public.
• Managing the needs of children and their families can be improved though collaborative goal setting between professionals from different disciplines.
• Children should be included in decision making about their CSN; e.g, children using AAC may choose to adopt more accepted means of communication technology eg. text messages or email.
• All relevant staff should be familiarised with the child's communication needs and style of communication in order to adapt accordingly.
• AAC users need ongoing support as they move through the education system.

Employment

Problems identified

• Although employers may report positive attitudes towards employing people with CSN, these people are still more likely to be unemployed or employed at levels below their education status, and may be at a disadvantage for promotion opportunities.
• Even supportive employers may lack understanding of CSN and make only limited adjustments, leading to a gradual withdrawal of people with CSN from the workforce.
• Common employment barriers for people with CSN are noise, tasks requiring speed, speaking to groups of people, attitudes of others and their knowledge about communication difficulties.
• Employment experiences of families and carers of people with CSN may also be affected, e.g. parents of children with CSN may have difficulty in finding suitable childcare.

Potential for improvement

• The mechanisms and policies which are already in place to help people with physical disabilities get into the workplace could be extended to address the specific needs of people with CSN.
• The use of "social networks" may be useful in helping some groups of people with CSN into employment.
• Many of the barriers mentioned above can be removed through the use of relatively straightforward low cost adaptations.

Criminal Justice

Problems identified

• A high proportion of individuals in young offenders institutions have communication difficulties.
• Individuals with disabilities are more likely to be victims of crime.
• The court tradition of oral argument automatically places individuals with CSN at a disadvantage.
• The formality and complexity of language used in interview and court contexts may place excessive demands on people with CSN. As a result, they may be unable to provide necessary information and/or be misrepresented as uncooperative.

Potential for improvement

• Individuals with CSN can provide reliable testimonies if suitable adaptations can be made. Professionals need specialised training in recognising and meeting the needs of people with CSN in order to communicate appropriately and to avoid underestimating or overestimating their capabilities.
• Some people with CSN may benefit from the 'Appropriate Adult Scheme', where a professional such as a speech and language therapist facilitates communication at each stage of the legal process.
• Preliminary reports indicate potential benefits of speech and language therapy provision for young offenders.

GAPS IN THE LITERATURE

There are a number of prominent gaps in the literature. Discussion with the project reference group identified a number of key areas where literature is limited.

• 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 that the 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).

CONCLUSION AND RECOMMENDATIONS FOR FURTHER RESEARCH

Communication support needs must be seen within the broader disability rights framework. Under the Disability Discrimination Act (1995) all service providers have a duty to provide a "reasonable adjustment" to enable a disabled person to access their services. This refers not only to making changes to the physical environment (producing ramps etc.) but also to adapting the ways that services are delivered. The latter has a direct consequence for people with CSN who, as the literature indicates, experience considerable difficulties in accessing the services that they need.

We conclude that there are three lines of enquiry or "research strands" which have the potential to make a substantive contribution to the field and fill gaps in the overall knowledge base associated with CSN. In each case it is proposed that a group of people with communication support needs be instrumental in setting up and monitoring the project.

Study 1. Expectations and improvements for service users with Communication Support needs
The literature, by its nature, reports specific aspects of the experiences of subgroups of people with CSN, for example the health needs of people with aphasia following stroke. It is proposed that a study be set up to obtain a comprehensive picture of experiences of the full range of services of the full range of people with CSN. In order to map different levels of need across groups it is proposed that such a study should make use of a single scale of "need" which would help provide a snapshot of current need in Scotland. The aim of such a study would be to go beyond the identification of barriers towards establishing key directions for policy makers and other agencies in making living with a communication support need easier. Such a project might also have an economic dimension, capturing the financial impact of their difficulties on people with CSN and on society as a whole. Such a study would be likely to make use of questionnaire and qualitative interview data.

Study 2. Public attitudes to and understanding of people with Communication Support Needs
The literature clearly indicates that there are concerns regarding public knowledge about, and attitudes towards, people with CSN. It is proposed that a study be set up to obtain a comprehensive picture of public experience of and attitudes towards people with CSN across Scotland and address issues of ignorance and prejudice associated with CSN. Such a study would be designed in two elements. In the first part a national representative survey would be taken of the public experiences of CSN in their own lives and in the public domain. This would include an element designed to establish what could be done to meet the needs of people with CSN. The aim of this study would be to address some of the prejudice and lack of awareness surrounding CSN, which were identified as significant barriers in this review.

Study 3. Developing and evaluating a communication friendly environment across local services
Much is already known about what is required of services in improving the opportunities for people with CSN, and a number of training packages aimed at promoting communication access are already available. It is proposed that these be developed for the full range of people with CSN and introduced and evaluated in a coherent fashion across the full range of services in the public and private sectors within a given geographical area. This would include publicity, training and the availability of support workers related to specific aspects of services for example employment and criminal justice. The results of such an evaluation would be reported in terms of uptake and performance amongst the professional groups concerned and in terms of improvements to the experience of people with CSN. Such a project would require the "buy in" of a forward looking local authority which wanted to act as a beacon for social inclusion and which is already well integrated with local health, education and social services. Such an evaluation would be likely to adopt a mixed methodology, making use of survey and quantitative audit data coupled with nested interview and diary studies.

« Previous | Contents | Next »