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Ofqual’s decision this week to stop speaking and listening assessments from counting towards final grades in GCSE English and English language will severely disadvantage students with recognised speech, language and communication needs, according to The Communication Trust and the Royal College of Speech and Language Therapists (RCSLT). Anne Fox, Director of The Communication Trust said: ‘this move will damage one of the most important drivers for ensuring that speaking and listening is given due consideration in secondary education, at a time when oral communication is becoming more important within the workplace and wider economy than ever. RCSLT and The Communication Trust fear that, if the speaking and listening assessment no longer contributes to a grade, speaking and listening will be given less emphasis in the classroom.  This will diminish the role and importance of spoken language, which is the foundation for literacy. The organisations have today jointly written to Ofqual Chief Regulator Glenys Stacey to express their disappointment and concern and to reconsider the decision. The term is used to encompass the experience of a wide range of communication difficulties associated with a number of different disabilities. It is important that CSN is one aspect of this broader movement which emphasises the rights of the individual and prefaces the move from doing "to" to doing "with" the person with the disability or condition. People with communication support needs have difficulties associated with one or more aspects of communication.
This includes verbal understanding, expressive language, speech and the capacity to understand someone's intended meaning rather than the words themselves. More specifically for the purposes of this review, it refers to the way in which individuals function in the public domain and interact with people that are in a position to affect their everyday lives.
It is important in its own right, in that an individual needs to be able to understand what others say and express themselves in order to function socially, and for the implications it has for all aspects of our lives, including accessing services, employment, education etc. Support refers to the activities put in place to support such individuals, whether at the request of the individuals themselves or at the recommendation of others, for example a doctor, a therapist or a social worker.
It can refer to specific interventions designed to facilitate new communication techniques but, again, for the purposes of this study, it refers to the use of adaptations that individuals and organisations can make to facilitate the effective involvement of individuals with difficulties in understanding and making themselves understood. Support also refers to the assistance that is available from others in the individual's environment, whether family member, professional or volunteer. Needs occur when an individual or group perceive themselves or are perceived to have difficulties associated with their communication which inhibits their involvement in society. As Aitken and Millar have observed, the term communication support needs has the benefit of emphasising the needs arising out of the difficulty rather than the difficulty itself (Aitken and Millar 2002). It places the onus on others to find ways to communicate with, listen to and find out the preferences of the individual.
Finally, it emphasises the fact that there may be more differences within any group of people with disability ie. This approach to disability is encapsulated in the Disability Discrimination Act (1995) in the UK.
This concept of discrimination applies to all service providers if they make it "impossible or unreasonably difficult" for a disabled person to access their services. Along with physical access the Act specifically refers to "access to and use of means of communication" and "access to and use of information services".
This legislation has far reaching implications for service providers with respect to communication support needs. Work by Thomson, Stewart and Ward (1996) at the University of Edinburgh has helped to differentiate levels of need.
An indicative table representing this multidimensional approach to level of needs with regard to children who use augmentative and alternative means of communication is provided in Appendix 1.
Although no such table has been generated for communication support needs as a group there is every reason to suppose that this system could be adapted to meet a wide range of different groups. These needs can be very specific, for example isolated problems in speech production, or they can be pervasive, for example in the case of people with learning disability who have difficulties understanding what is said to them, formulating what they are trying to say and in using speech effectively. In practice, difficulties commonly co-occur and it is necessary to take into consideration this range when approaching the needs of a given individual.
They can also be very severe, as in a person who has severe learning disability or a pronounced expressive difficulty following stroke and can therefore produce little more than single words, or they can be relatively mild, so that it would only be possible to identify the difficulty with specific reference to the individual's relatives and friends. Similarly, it may only be possible to identify a need in the context of the life course, as lower levels of communication skills are the norm in young children.
Some communication support needs may be easier to recognise than others and this may lead to more appropriate responses by the public.
In general, there is an identifiable gap in popular perceptions of people with communication support needs.
Having established the significance of the social model of disability as a framework for understanding communication support needs it is important to illustrate the range of people who may be classified as falling within this group.



In the main those involved have difficulties which are associated with recognised physical, sensory, cognitive or medical conditions resulting in communication impairments.
Table 2.1 provides a list of specific disabilities which may have associated communication support needs. This group could also include people with communication difficulties associated with schizophrenia, depression and other mental health problems.
Likewise, early experiences associated with an individual's condition and the possible stigma associated with it can have a cumulative effect on the individual concerned. There are also those who adjust to their communication difficulties and would not consider that they had any additional needs.
It would be helpful to identify both the number of individuals likely to have communication support needs and the extent of anticipated need in terms of severity of the communication difficulty experienced. Commonly this would be ascertained by testing the performance on communication measures of the individual, on the understanding that this provides an objective measure of need.
Incidence means the number of new cases in the population, prevalence is the total number of cases.
It is important to recognise that this approach is essentially medical in origin and reflects an assumption about the ability to define a "case".
That is, the extent to which something is a need is partially determined by the individual's recognition that they have such a need and this is partially a function of the extent to which their community responds to that need. Thus two people with comparable levels of speech and language difficulties following a road traffic accident might have similar, objectively determined, impairments in terms of their performance on language tests, but have very different communication support needs. In one example, they may have a positive family environment and an employer prepared to adjust the nature of the job that they used to do to meet their needs. In another, where the person lives alone or without family support the trauma associated with the accident may set off a chain of events that make it much more difficult for the individual to adjust in a positive manner. If this is accompanied by an inflexible employer who makes the person redundant, it may result in a far higher level of communication support need.The pattern of difficulties experienced can change across time as the need increases or decreases. For example, the needs of someone with speech and language difficulties following stroke who experiences a second stroke, with a resulting increase in their dependency and communication need, can be contrasted with a child with an identified delay in language development whose difficulty may recede with time, the group commonly called "late bloomers" (Rescorla and Roberts 2002).
A comparable pattern is identifiable in stammering where the number is higher in the early years. The reverse pattern is identifiable in hearing loss which increases with age (see Figure 2.1 below).
There may also be new technologies coming onto the market which influence the extent to which an individual is likely to have communication support needs. For example, people who use augmentative and alternative communication ( AAC) devices will require support at different times to learn new systems as their needs change and technology advances. Similarly, it is likely that the relatively widespread introduction of the cochlear implant may reduce the number of people with hearing loss who are excluded from mainstream society. Similarly, while the introduction of improved neonatal care increases the chances of survival for individuals, these groups often have a high level of subsequent need of which their communication support needs are only a part.Finally, any estimate of CSN is related to the existing services and whether they seek to identify the group concerned. One obvious example here would be children with persistent developmental language difficulties. Historically, services were developed around a principal of relatively early identification and treatment.
Recent longitudinal data have shown that, for many, these difficulties continue through primary, in to secondary school and beyond. Services have yet to catch up with this and the identification of prevalence has lagged still further behind.
Thus, while there is extensive provision for such children in primary school, this virtually disappears in secondary school and there are no services at all for such children when they become young adults.
Despite these difficulties, there have been attempts to summarise the prevalence literature across the field, most notably in Enderby and Daves (1989) and a recent edition of Advances in Speech Language Pathology (Ferguson 2005). In this last volume, for example, Enderby and Pickstone (2005) summarise data on the incidence and prevalence of acquired communication and swallowing disorders from a number of different sources. Nor does it include people with communication support needs associated with deafness or visual impairment. In short, the literature in this area leaves a good deal to be desired and any estimates of the population are likely to be a function of what the individual perceives to be a difficulty and whether someone can do something about it.
Taking these provisos into consideration, Table 2.3 overleaf provides estimates of the numbers of those likely to experience communication support needs.
Although there are some precise figures from specific studies, these estimates fluctuate, largely because the definitions and cut-offs change.


All figures follow the pattern of reporting prevalence in terms of number of individuals per 100,000. These categories are intended to emphasise specific groups with recognisable communication disabilities. They draw no explicit distinction between communication disabilities and communication support needs. Although they are intended to be different from one another there is a possibility that some of these groups overlap to some extent. Moderate learning disabilities or specific learning disabilities other than those specifically related to speech and language development are not included because it would not generally be true that all such children have communication needs.
The figures do not take into consideration communication support needs that change across the lifespan or the impact of environmental modifications which might affect the definition of that need. For example, Enderby and Philip concluded that 1% of the population, or 1000 in 100,000, have severe communication difficulties. This is comparable to the 1.8% from the Australian household survey (Harasty and McCooey 1994).
The most recent study to specifically collect data on the full range of people with communication disability, rather than adding up reports related to a wide range of groups such as that above, is from Victoria, Australia (Perry, Reilly, Cotton et al. They identified people with complex communication disabilities and paid particular attention to the level of communication disability within other disabilities.
The total number reported was 1 in 500, or 200 in our notional population of 100,000, but did not include people with dementia. These data are included to highlight the role of definitions in the process of reporting prevalence.
Complex communication needs were described in the Victoria study as follows:" People who have complex communication needs are unable to communicate effectively using speech alone.
They and their communication partners may benefit from using alternative and augmentation ( AAC) methods, either temporarily or permanently. 261)2.16 A survey of the needs of adults with "speech disabilities" in Newcastle ( UK) was carried out by the Joint Advisory Group (sensory and physical disability) and Disability North. Using a "household survey" method this study identified 0.4 % or 400 in 100,000 (Knight, Sked and Garrill 2003). By definition people referred through this route will tend to be those with the most pronounced problems. They will also be those who are able to access services because of availability of appropriate referring agents and existing speech and language therapy staff. Consequently this approach to the data is also likely to represent a considerable under estimate of the number of cases in the population. In recent years the term "low incidence disability" has come into circulation, particularly with regard to children at least. Of course many of these children will have communication support needs by virtue of their other disabilities.
In some cases, the use of the term low incidence disabilities specifically refers to children with communication support needs as a distinct group (Scottish Executive 1999). In others, they are not covered directly but the communication needs of all children with disabilities and social and emotional needs are recognised ( DFES 2006).
The use of the term low incidence conditions suggests that only people with the most serious impairments are being considered and that this group as a whole is likely to have the highest level of need.
While it is likely that the level at which incidence is set is probably inversely related to the level of individual need. In summary, if you ask people to indicate whether they have a problem that would merit identification as a communication support need the figure tends to be in the region of 1000 in a 100,000 or 1%.
If you examine populations using explicit criteria such as those often identified by practitioners the figure tends to be much higher. It is reasonable to assume that this partly reflects the variation in perception of what is a need that requires support of one sort or another. The public tend to identify only the most severe cases, whereas practitioners take a broader view because they believe there are more people whose situation might be improved by additional support. Given the range of the data we would take the position that it is reasonable to assume that a conservative estimate of the number of people with marked communication needs such that they would find it difficult to communicate their needs effectively without help would be in the region of 1-2% of the population.



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