Defining communication disability in under-served communities in response to the World Report on Disability

Abstract

The World Report on Disability takes a broad emphasis on disability. In their paper on the implications of this report for speech-language pathology and for people with communication disabilities, Wylie, McAllister, Davidson, and Marshall (2013) emphasize the importance of promoting a broader view of communication disability. This commentary explores the challenges of investigating the epidemiology of communication disability, in particular, the difficulties defining the disability and then measuring it in a valid and reliable manner. The two interpretations are discussed of the concept medically under-served as it relates to speech-language pathology: service availability and service accessibility. Bourdieu's forms of capital were then explored as a way of understanding an individual's perception of capital and how service provision can enhance perceived capital and minimize loss of capital. It is important services are mindful of the variations of capital and engage with communities to facilitate access and increase their perceptions of the value of speech-language pathology (SLP) services. The focus throughout is on pre-school children with communication disability in the context of a program of research in England, called Child Talk–What Works.

Keywords::

• World Report on Disability
• World Health Organization
• under-served
• Child Talk–What Works
• communication disability
• children
• economic
• social
• cultural
• forms of capital

Introduction

The article by Wylie, McAllister, Davidson, and Marshall (2013) is a much needed reflection on the implications of the World Report on Disability (World Health Organization and The World Bank, 2011) for people with communication disability and for speech-language pathologists (SLPs). The World Report on Disability takes a broad view of disability. It is important that speech-language pathologists (SLPs) promote communication disability within that context. The article by Wylie et al. (2013) outlines an agenda for SLPs in response to the World Report on Disability. In this commentary on their paper, we will explore issues relating to two of the questions they pose about how many people have communication disability and about being responsive to the needs of under-served communities. Our focus is on children with communication disability in the context of a program of research in England, called Child Talk–What Works.

The first question posed by Wylie et al. (2013) is about the prevalence of communication disability. Specifically they ask “of the estimated one billion people with disabilities how many have a communication disability?” (p. 2). This question arises from the World Report on Disability recommendation to improve the collection of data about disability. The authors of the World Report on Disability observe that an understanding of the numbers of people with disabilities and their circumstances can help us to improve services and remove disabling barriers (World Health Organization and The World Bank, 2011). There is no doubt that data on the prevalence of communication disability are needed in both developed and developing¹ countries since the current estimates are derived primarily from developed countries and from the well-served communities within those countries.

The need for data on prevalence presents a number of challenges. The first is one of definition. This issue has been visited in the speech-language pathology literature over the decades (Aram, Morris, & Hall, 1992, 1993; Cole, Dale, & Mills, 1990). A review of prevalence studies noted the varying definitions that had been used to identify children (Law, Boyle, Harris, Harkness, & Nye, 1998), with different cut-off points being used on speech and language assessments. Studies of children with specific language impairment (SLI) have also used a wide range of different measures and criteria, from a single assessment, such as receptive vocabulary (Fischel, Whitehurst, Caulfield, & DeBaryshe, 1989) to a complex composite (Tomblin, Records, & Zhang, 1996); or varying combinations of assessments and cut-off points to establish case status. For example, Bishop and Edmundson (1987) identified children as speech and language impaired if any of scores on six speech and language assessment fell more than two standard deviations (SD) below the mean and if more than one score fell below 1 SD below the mean. On the other hand, Conti-Ramsden, Botting, Simkin, and Knox (2001) also use six different assessments, this time to differentiate children with and without ongoing language impairment; they use a cut-off point of 1 SD the mean on any of the six assessments. McLeod, McAllister, McCormack, and Harrison (2012) further note that studies of prevalence have used different definitions and different informants.

Apart from the inherent circularity (Law et al., 1998) of using cut-offs on standardized assessments to define prevalence, use of these kinds of definitions can be even more problematic when we attempt to apply them to under-served communities if the measures have not included the populations concerned in any standardization. Existing estimates of prevalence are based on a variety of measures, using various criteria which, clearly, affect the prevalence estimates (McLeod et al., 2012). Furthermore, as Wylie et al. (2013) note, determining prevalence depends on whether the focus is on the impairment, or on activity and participation levels. Typically, research investigating children with SLI measures impairment rather than broader aspects of the child's communicative functioning (see for example, the outcomes measured in studies reviewed by Law, Garrett, & Nye, 2010).

A more fundamental challenge facing us as we attempt to estimate prevalence with under-served populations is the idea that different stakeholders will see communication disability differently. We already know from the literature that criteria for identifying children in research studies do not always match those used in clinical practice. For example, the definitions of SLI used in research do not always match clinical samples (Dockrell, Ricketts, Palikara, Charman, & Lindsay, in press; Stark & Tallal, 1981).

Part of the difficulty of achieving agreement about where the boundaries lie between typically-developing children and those with an impairment is that disability generally, and communication disability in particular, can be viewed as socially constructed. A strong social constructivist view would argue that it is the social context that defines the disability rather than it being inherent in the person themselves. The World Report on Disability (World Health Organization and The World Bank, 2011, p. 4) takes a “bio-psycho-social” position that recognizes the contribution of the health condition, the person, and the person's context to the level of functioning and disability, and notes that not everyone will experience disability in the same way. This may be what is behind some of the differences in parents’ decisions to take up therapy found by Roulstone, Peters, Glogowska, and Enderby (2003) in children with similar scores on standardized assessments, where the severity of impairments as measured by a standardized score did not necessarily predict which parents took up offers of therapy. Bishop and McDonald (2009), when combining a parent checklist with language assessment, found that, although the combination of both methods improved the level of identification of language impairment, just over half of the children who were identified by the combined research definition had not previously been referred to speech-language pathology services. However, these kinds of mixed definitions have not so far been used in determining prevalence, although the composite used by Tomblin et al. (1996) does introduce an element of clinical judgement in the way that the algorithm was derived. Whether or not an impairment is seen as a disability is likely to vary depending on the individual person and their environment. It seems reasonable to assume, therefore, that those from diverse backgrounds will experience communication disability in diverse ways. Since language functions not only as a means of communication but as the means by which we engage with our culture, the values placed on communication disability will reflect the evaluations of that culture. Thus, Tomblin and Christiansen (2010, p. 40) argue that that “the locus of the disorder in communication disorder will not be found in the characteristics or behaviour of the individual but rather in the cultural context”.

From the above discussion, it can be seen that the use of existing definitions to determine estimates of prevalence in the developed world is far from straightforward. Gathering data on prevalence from under-served communities in either the developed or the developing world is likely to be even more challenging. A first step is, therefore, to investigate the understandings of those in diverse communities, both of normal language development and of communication disability. A project currently underway in England, Child Talk–What Works (CTWW), has within it a component to investigate the perspectives of under-served communities in England. The rest of this paper explores the meaning of under-served as developed by the project and sets out the methods used to identify under-served communities.

What does under-served mean?

The second question posed by Wylie et al. (2013) that we will discuss concerns the response of the SLP profession to the needs of under-served people with communication disability. They draw our attention to two interpretations of the concept medically under-served as it relates to speech-language pathology: service availability and service accessibility. In the provision of any service there is always a concern that some members or groups within the community, be it a village, city, or country, are not accessing or being provided with the service or the level of the service that one might expect given the demographics of the population. So, for example, if one knows the expected prevalence of a condition, or the numbers referred from within the majority of the population, then one might expect that to be reflected in the numbers being referred to and accessing a service from all parts of the community. However, there is no single agreed definition of under-served communities as they are not homogeneous groups; individuals come from diverse communities, cultures, and language groups (Milbourne, 2002), and hold different values in relation to material and familial resources and roles.

In the literature, terms used to describe under-served populations have included phrases such as non-engaging (Toynbee & Allen, 2008, p. 374) or hard to reach (Department of Health, 2002, p. 1; Pickstone, Hannon, & Fox, 2002, p. 253; Pomerantz, Hughes, & Thompson, 2007, p. 1). The lack of clarity in relation to which term is used to identify the under-served community can lead to confusion and alienation between the service providers and the service users in relation to what each label actually means. Wylie et al. (2013) suggest some of the groups who might be viewed as under-served include those in rural and remote area, families living in disadvantaged circumstances, as well as those in various minority groups.

However, within the context of SLP services, the definition and identification of under-served populations is not necessarily the same across services. There is no easy consensus on the scope of the problem or where boundaries might be drawn. Indeed it may be the case that a service categorizes a group as under-served, but the group themselves do not and vice versa. Another service in a neighbouring area may identify different groups as under-served.

Bourdieu (1986) suggests that individuals have access to various forms of capital, that is, resource, which support their functioning and position within society. For example, belonging to a dominant social group or holding a prominent position within a group brings social capital that potentially has extrinsic and/or intrinsic value. For instance, a community leader may be able to book a prestigious local venue that an ordinary member of the community could not access. These various forms of capital include economic, social, and cultural resource. The notion of capital is a useful concept for helping to understand why communities come to be regarded as under-served.

In Figure 1, we depict examples of factors that undermine the economic, social, and cultural capital of a group. An illustration of this could be a SLP service that may not have resources to provide Makaton courses for their population. However, if they did, there may be sectors of their population who could not attend courses because they cannot afford the bus fare. So the population can legitimately regard themselves as under-served because there is no Makaton course. If the service provider had provided the course but no-one attended, the service provider might inadvertently view the population as non-engaging, whereas, in effect, there is a lack of economic capital. Thus, in Figure 1, the left side represents issues of capital associated with service provision that lead to people being under-served. On the right side of Figure 1 are characteristics of the capital of a community, that may lead them not to take up services and may result in service providers labelling them (often incorrectly) as non-engaging. The aim of this diagram is to make us mindful of the difference in perceptions of barriers to participation.

Figure 1. Child Talk–What Works community capital depicting reasons for service use. NHS = National Health Service.

Child Talk–What Works: Exploring the views of under-served communities

The Child Talk–What Works program is specifically interested in speech-language pathology services and is exploring the perceptions of under-served communities regarding language development, language impairment in pre-school children, and speech-language pathology services. Our study is sited in six speech-language pathology services in England—a study in the developed world. In discussion with each participating speech-language pathology service, we are identifying community groups that the participating speech-language pathology service reports do not currently access or who do not access them. This has revealed a number of candidate groups and, in discussion with Barnardos² (a partner in Child Talk–What Works), the following three have been prioritized for the study: an ethnic minority community (in this case, a Somali community), people of low socio-economic status and looked-after children.³ Members of the three groups are being contacted with the support of community organizations such as Barnardo's, city councils, and other workers who are currently engaged with the groups. With their assistance, we are working with the groups themselves to tailor the techniques of data elicitation to their context and culture. This is a participatory process to facilitate engagement and to identify a context within which they will be able to explore and communicate their views about the nature of communication, communication disability, and its remediation. In order to form relationships with these groups, an extended period of contact may be required, using a combination of group-based activities and individual interviews. These will take place in non-National Health Service (NHS) settings in which the participants are familiar and comfortable, such as local village halls or community centres. Parents, families, and/or carers are being recruited from the community rather than through the NHS. In collaboration with parent research partners, community organizations, local participation workers and NHS translators, we ensure that all communication with these families is appropriate and that informed consent is obtained.

This work is still in its early stages, but the notion of capital allows us to reflect on some preliminary findings from work with the ethnic minority community in the study and with one of the sites where there is a high proportion of families of low socioeconomic status. Local speech-language pathology services have identified issues and addressed them by investing economic capital in the form of translating documentation and using interpreters where required and setting up clinics in local communities. However, the under-served community has pre-existing pathways for seeking support. Whilst recognizing that their child is slow to talk, they would seek out pathways internal to the community for support. Seeking external help might undermine their social capital and lead to stigma. The final comment to make is that, within a community, individuals have varying amounts of the different types of capital which might lead them to access SLP in differing ways. So, although we can work with a community to facilitate general access to a service, there may be individuals who will respond differently. Understanding the individual's capital and how the service provision can enhance capital and minimize loss of capital is, therefore, important to increasing their perceptions of the value of SLP services.

Conclusion

We have explored issues relating to two of the questions posed by Wylie et al. (2013) in the context of a research program focusing on interventions for pre-school children. First, we commented on the challenges of investigating the epidemiology of communication disability, in particular, the difficulties defining the disability and then measuring it in a valid and reliable manner. We have explored Bourdieu's concept of capital as a way of understanding how communities come to access and value speech-language pathology services.

Notes

(1) We have chosen to refer to developed and developing countries rather than the terms “majority and minority world” used by Wylie et al. (2013) in their lead article. Their choice could form the basis of an interesting debate in itself. However, as they did, we will stick to a brief justification of our choice: we use the terms developed and developing since these are the terms used in the World Report on Disability and are based on definitions set out by the International Monetary Federation (IMF). The IMF uses a flexible classification system that considers “(1) per capita income level, (2) export diversification—so oil exporters that have high per capita GDP would not make the advanced classification because around 70% of its exports are oil, and (3) degree of integration into the global financial system” (International Monetary Fund, 2012, p. IX).

(2) Barnardo's is a British charity found in 1866 to care for vulnerable children and young people. Today it provides a comprehensive range of local support, counselling, fostering, adoption, and training services for more than 100 000 children, young people, and their families.

(3) The UK Children Act 1989 refers to “looked after children”. This includes children who are subject to care orders and those who are voluntarily accommodated. This may be as a result of abuse or neglect, but may also be because of the illness or death of a parent, or because of their own disabilities and complex needs. http://www.legislation.gov.uk/ukpga/1989/41/ contents [Retrieved 22/08/2012].

Acknowledgements

We would like to acknowledge the contributions of other members of the Child Talk–What Works team who have contributed to the discussions that underpin this writing, particularly Dr Julie Marshall.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Child Talk–What Works presents independent research commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG-0109-10073).