Communication Support Needs: A Review of the Literature

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CHAPTER TWO: WHO HAS COMMUNICATION SUPPORT NEEDS?

Terminology

2.1 The review concentrates on the experiences of individuals with communication support needs. The term is used to encompass the experience of a wide range of communication difficulties associated with a number of different disabilities. Although the term "communication support needs" started to come into use in the 1990s and we begin to see definitions emerging at the start of the new millennium (Millar 2001), different combinations of these words have been in use for some time.

2.2 The term owes its origins in the 1973 Rehabilitation Act in the US and the series of highly influential subsequent publications, including the UN Convention on Human Rights which followed. 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. CSN, as a relatively new term, has not yet entered the disability vocabulary but the fact that self-realization is so intimately connected to the individual's communication skills means that it is, in effect, at the heart of what is understood by disability rights.

Definitions

2.3. People with communication support needs have difficulties associated with one or more aspects of communication. Communication refers to all aspects of interpersonal communication. This includes verbal understanding, expressive language, speech and the capacity to understand someone's intended meaning rather than the words themselves. It also refers to literacy and other means by which individuals interact with one another. 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. The key feature of communication is that it is both the medium and the message. 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. at the level of the individual, than between diagnostic group. Thus it emphasises person-centred rather than generic models of care.

2.4. 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. For example, in a recent publication from the Disability Rights Commission on improving health service for disabled people, it states explicitly that "[I]t is the legal responsibility of the health services to provide and pay for communication support and to provide information in alternative formats for those service users who need it" ( DRC 2006a, p.3).

2.5. Key to the concept of need is how the level of need should be described. 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. Needs are appraised across six strands:

  1. The physical environment or context within which the individual can function optimally
  2. The mode of service delivery and adaptations required
  3. The level of support required by the individual to enable her/him to engage optimally with the curriculum or other activities
  4. Access to specialised resources, facilities or technologies required by the individual
  5. Access to specialised agent(s) required to support the individual
  6. Access to the most specialised resources

2.6. 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. So a problem may emerge relative to other children only when the child goes to primary school, or later to secondary school.

2.7. These needs can be difficult to characterise because of a number of factors:

  • There is a tension between dealing with all communication support needs at the level of the individual and improving the way that society can interact effectively with these groups
  • Needs change across the lifespan
  • Needs can be affected by context (communication demands of school, home or work setting, use of the telephone, ambient noise etc.)

2.8. Some communication support needs may be easier to recognise than others and this may lead to more appropriate responses by the public. For example, CSNs that are related to problems in speech ( e.g. stammering) are more apparent to the public than CSN associated with difficulties in understanding language comprehension. In general, there is an identifiable gap in popular perceptions of people with communication support needs. This relates to the identification of the nature of the difficulties, the best ways to respond to those difficulties and to the ways that the communication difficulties interact with other disabilities.

2.9. 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. In some cases the disabilities are specific to communication. In other cases communication is an associated manifestation of the disability. This group could also include people with communication difficulties associated with schizophrenia, depression and other mental health problems. Key to this discussion is the fact that the communication impairment associated with a specific condition does not determine the nature or the extent of the communication support need.

Table 2.1 The range of specific groups of people with disabilities which may have Communication Support Needs

Aphasia following a stroke

Hearing impairment

Autistic spectrum disorder

Huntingdon's chorea

Asperger's syndrome and other

disorders of social communication

Learning disability

Alzheimer's disease

Laryngectomy

Cerebral palsy

Motor Neurone Disease

Cleft lip and palate

Multiple sclerosis

Deafness

Muscular dystrophy

Developmental language delays and disorder

Neurological disease

Dyslexia

Specific language impairment

Dementia

Stammering

Friedreich's ataxia

Visual impairment

Head injury

Voice disorders

For many groups communication support needs are present throughout the lives of the individuals concerned but the nature of those needs change across time. 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. For others, communication needs emerge with the onset of illness. There are also those who adjust to their communication difficulties and would not consider that they had any additional needs. It is recognised that there are both common and separate factors affecting the experiences of the groups concerned.

How many people have Communication Support Needs?

2.10. 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. The terms commonly used to describe the numbers concerned are incidence and prevalence. 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". In attempting to ascertain the number of people with CSN it is important to recognise that such an approach provides a measure of performance but not necessarily of need.

2.11. There are four reasons why it may be difficult to obtain a definitive picture of the number of people with CSN at this stage:

  1. While data are available for the prevalence of communication need in some of the individual groups identified above, there is no recognised definition of CSN which has been developed sufficiently well to be used at a population level.
  2. As the term "communication support need" suggests, the definition is, to a considerable extent, socially rather than objectively determined. 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.
  3. 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.
  4. Finally, any estimate of CSN is related to the existing services and whether they seek to identify the group concerned. Services develop to meet the identified needs of specific groups of patients. The two are symbiotically linked. If there are no services, the groups concerned will not manifest at all. 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. Not surprisingly, therefore, while we can estimate a prevalence figure in primary school (Tomblin et al 1997), no such figures exist for secondary school children or for adults with developmental language difficulties.

2.12. 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. Summing their figures for prevalence indicates a figure of 1193 per 100,000 or 1.2% but this figure does not include people with either general or specific developmental difficulties (see Table 2.2 below). 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. The interaction between prevalence and factors influencing its calculation are represented graphically in Figure 2.1.

Table 2.2 International figures on people with acquired communication difficulties in adulthood (from Enderby and Pickstone 2005)

Incidence per 100,000

Prevalence per 100,000

Number of speech or swallowing problems

Stroke

220

500

66 with communication disorder

120 dysphagia

Parkinson Disease

20

160

69 dysarthria
30 dysphagia

Multiple Sclerosis

3.0

144

76 communication disorder
10 dysphagia

Dysphonia

28

28

28

Motor Neurone Disease

4

7

6

Myasthenia Gravis

3

30

10

Head injury

Severe 10-15
Moderate 15-20
Mild 250

228 longstanding problems

160

Brain tumour

20

-

7

Encephalitis

7

-

5

Tourette Syndrome

0.5

40

20

Progressive supranuclear palsy

-

6

6

Muscular dystrophy

-

50

20

Guillian-Barre syndrome

2.5

-

2.0

Figure 2.1 Factors impacting on the number of people with Communication Support Needs

Figure 2.1 Factors impacting on the number of people with Communication Support Needs

2.13. 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. Where populations are known to change across the lifespan, estimates of overall prevalence are taken from published sources and are not calculated separately.

Table 2.3 International prevalence estimates for people with communication support needs

Number per 100,000

Source

General Learning difficulty (severe)

600

Foundation for People with Learning Disabilities, 2004.

Specific speech and language difficulties

7800

Tomblin et al.1997

People with Alternative and augmentative communication needs

1200

Light et al. 2003

Autism

600

Charman 2004

Hearing impairment/deafness

8600

National Center for Health Statistics 1994

Acquired neurological difficulties

1193

Enderby et al.2005

Stammering

720

Craig et al. 2002.

TOTAL

20713

2.14. 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. Furthermore, these figures do not indicate the proportion of people in the groups who would define themselves as having communication support needs.

2.15. It is important to note that the figures above do not directly compare with many others. 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. 2004). 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. Hearing limitation is not the primary cause of complex communication need." (Perry et al. 2004 p. 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). The definition of speech disabilities is not specified, but it is clear that they are only dealing with the most pronounced cases and the authors indicate that they feel this figure is an under estimate.

2.17 Another route into the data is to look at the referral to speech and language therapy services. 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. The most recent figures available for Scotland indicate that in 2005 the total number of individuals on speech and language therapy caseloads was 46,833, which represents a figure of one case in every 110 people in Scotland or slightly under 1% of the population (Information Services Division 2006).

2.18 Much depends on whether one takes a more stringent (conservative) or a more inclusive (liberal) approach to the identification of need. In recent years the term "low incidence disability" has come into circulation, particularly with regard to children at least. As the name suggests this tends to refer to only the most serious cases. In the U.S. the Individuals with Disabilities Education Improvement Act ( IDEA) of 2004 defines low incidence disabilities as "a visual or hearing impairment, or simultaneous visual and hearing impairments; a significant cognitive impairment; or any impairment for which a small number of personnel with highly specialized skills and knowledge are needed in order for children with that impairment to receive early intervention services or a free appropriate public education" (United States Congress 2004 1462 § 662(c)(3)). 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. A more liberal approach to need results in the inclusion of a much higher number of people but for many their needs are like to be much less pronounced.

2.19. 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.