Changing practice: Implications of the World Report on Disability for responding to communication disability in under-served populations

Abstract

The World Report on Disability provides a major challenge to the conceptualization and delivery of services for people with communication disabilities around the world. Many people, in both Majority and Minority World countries, receive limited or no support in relation to their communication disability. In this paper the prevalence of communication disability across the world (and the challenges to obtaining these data) are discussed, particularly in relation to disability more broadly. Populations that are under-served by speech-language pathology services in both Majority and Minority World countries are described. The paper describes organizational change theory and the potential it has, together with a biopsychosocial model of disability, to assist in understanding and influencing development of relevant services for people with communication disabilities (PWCD), particularly those who are under-served. Aspects of, and influences on, service delivery for PWCD are described. The need for novel ways of conceptualizing development of services, including population-based approaches, is highlighted. Finally, the challenges and opportunities for PWCD and for speech-language pathologists which arise from the nine recommendations of the World Report on Disability are considered and readers are encouraged to consider new and novel ways of developing equitable services for people with communication disabilities, in both majority and minority world settings.

Keywords::

• World Report on Disability
• World Health Organization
• people with communication disability
• under-served
• equity
• service delivery

Introduction

The long-anticipated World Report on Disability was published by the World Health Organization and the World Bank in 2011. The contents of this report serve as a challenge to the profession of speech-language pathology regarding broad, yet critical issues related to communication disability. The new collated data in the report emphasizes that the prevalence of disability is higher than previous World Health Organization and United Nations estimates of 10% (World Health Organization and the World Bank, 2011), with new estimates of ˜ 15% of the world's population experiencing some form of disability. This equates to approximately one billion people. The report includes estimates that the rate of people with significant disabilities ranges from 2.2–3.8% (World Health Organization and the World Bank, 2011), which equates to between 22–38 million people worldwide.

Whilst the World Report on Disability focuses on generic disability issues—without specifically addressing communication disability¹—it highlights a range of challenges for all disability service providers to respond to, including speech-language pathologists (SLPs). Due to the way disability is frequently conceptualized and measured, people with communication disability (PWCD) may not be accurately represented in estimates of disability, despite “encountering difficulties in everyday life” (World Health Organization and the World Bank, 2011, p. 22). The result is that appropriate attention may not be given to rehabilitation and community level support for those with communication disability. Such an issue is crucial to development of appropriate services for PWCD and presents a challenge for SLPs to take a broader view on communication disability, which includes shifting focus towards population-based measurement and intervention.

SLPs historically have adopted an individually-focused or disorder-based view of PWCD, rather than a population-focused or epidemiological view (Mulhorn & Threats, 2008). For communication disability to take a more prominent place in the call for equitable services for people with disability, SLPs must become part of the agenda to understand and address issues of communication disabilities across populations. Key questions for the speech-language pathology profession to address with respect to the World Report on Disability include:

• Of the estimated one billion people with disabilities, how many have a communication disability?

• Where are the gaps in speech-language pathology service provision?

• How do we ensure that population level needs for people's communication and swallowing receive adequate public attention?

• How can the speech-language pathology profession be responsive to the needs of under-served PWCD, in ways which will influence change to improve policies, services, and practices, and promote equity?

The complex dynamics of globalization demand greater awareness of equity issues and a re-examination of ways to develop and deliver services ensuring appropriate, accessible, and equitable services for all sectors of the population affected by communication disability. To promote such re-examination in the speech-language pathology profession, this article will overview change theory and its potential to understand and influence development of relevant services for PWCD, particularly those who are under-served. We discuss how global initiatives such as the World Report on Disability can result in policy and service changes for people with communication disability. This paper begins by considering who is under-served and why, critiques current approaches to service delivery for PWCD, and explores the challenges and opportunities for PWCD and for SLPs which arise from the World Report on Disability. In doing so, this paper frames up issues for consideration in responses to this lead article.

Under-served in context

How many people with communication disability?

A key recommendation of the World Report on Disability (World Health Organization and the World Bank, 2011) was the need to obtain a clearer understanding of disability issues through appropriate data collection, including information on both disability prevalence and factors impacting service use and service needs (World Health Organization and the World Bank, 2011). Measurement of communication disability is affected by a complex range of issues (see Mont, 2007; Mulhorn & Threats, 2008), including whether data collection focuses on medical conditions under-pinning impairments, or on activity and participation levels of the International Classification of Functioning, Disability and Health (ICF) (World Health Organization, 2001). A lack of understanding of what constitutes disability and “invisibility” of people with disability in some countries further complicates data collection. Nonetheless, epidemiological data is critical as communication continues to have a low priority on health and rehabilitation agendas (Hartley, 1998).

Disability in the majority world

Majority World² countries are making progress in identification and measurement of disability; however, there continues to be a lack of epidemiological data on communication disability (Olusanya, Ruben, & Parving, 2006). Broad prevalence data for communication disability in this context remains an aspiration; however, there are some useful indicators in the literature. Hartley and Wirz (2002) cite studies from three different countries (Pakistan, Uganda, and Zimbabwe) which suggest that between 38–49% of people with disabilities seeking help from rehabilitation services have communication difficulties. In a disability prevalence survey, 25% of children identified with disabilities in the central province of Ghana reported communication difficulties (Biritwum, Devres, Ofosu-Amaah, Marfo, & Essah, cited by Simeonsson, 2003). Such figures are not necessarily generalizable to a population level because we do not know that individuals accessing rehabilitation services are representative of all people with disabilities in these countries, but such figures may indicate a “ball park” view of the prevalence of communication disability amongst PWD.

Disability in the minority world

Disability epidemiology in the Minority World³ is more established and in some countries questions about disability are included in the national census. Rates are consistently close to those indicated by the World Report on Disability (2011); for example, Australia = 18.5% (Australian Bureau of Statistics, 2011); the UK ≈ 18%, (Office for Disability Issues, 2011); and the US = 15.1% (Brault, 2008). Yet, extracting communication disability rates, even in data-rich countries, is complex. Frequently communication disability is bundled with data collection about sensory difficulties. Communication disability also co-exists with other disabilities and can be a primary or a secondary source of disability; as a result, communication disability may not be counted separately. What is counted changes with how disability is defined and the methodologies used to gather and analyse data may be low in sensitivity. For example, the figures reported by Mulhorn and Threats (2008) from four Minority World countries, of 0.7–1.1% of the population having a disability, may reflect a low sensitivity of measurement in comparison to studies in Australia which found that 5.8% of people with disabilities reported requiring assistance with communication (ABS, 2011). McLeod, Harrison, McCormack, and McAllister (2011) found high variability in prevalence rates reported in the literature for paediatric populations (1–37%). There continues to be no unambiguous prevalence figures for communication disability at a population level in Australia or any other population (McCabe, 2001).

Whilst there is no denying measurement is complex and multi-faceted, to ensure we understand the communication needs across a population and can lobby for appropriate services, SLPs need to become involved in improvement of epidemiological measurement tools and concepts for determining prevalence of communication disability (Mulhorn & Threats, 2008). Some examples do exist of high quality epidemiological research into communication disability. For example, well-constructed and critiqued studies in paediatric populations include systematic reviews from the UK (Law, Boyle, Harris, Harkness, & Nye, 1998), 5.9% between 2–7 years; the US (Tomblin, Records, Buckwalter, Zhang, Smith, & O’Brien, 1997), 6–8% for kindergarten children; and Australia (McLeod & Harrison, 2009), 14.7–25.2% of 4- to 5-year-olds. The gradual development and refinement of well-researched data sets for paediatric and adult populations will form powerful tools for lobbying for appropriate levels of service for PWCD.

Under-served populations

Despite a global lack of data on communication disability prevalence and estimates of demand for and unmet need for rehabilitation services (World Health Organization and the World Bank, 2011), there is agreement that there are groups of people considered under-served in terms of the services they can access. Definitions from the medical profession can inform our thinking about under-served groups with respect to communication disability.

The concept medically under-served can be divided into two components: (1) medically under-served regions with an insufficient health workforce to meet population needs; and (2) medically under-served populations in which people experience barriers to healthcare accessibility. These barriers may include financial, language, or cultural issues (US Department of Health and Human Services, 2009). For speech-language pathology then, two key issues must be addressed:

(1) Service availability: Whether services exist and are fairly distributed and resourced according to population need?

(2) Service accessibility: Whether specific populations find services accessible when they do exist?

What are the barriers to access?

Barriers to access to health services are frequently grouped into sub-groups—structural, geographical, financial (Verdon, Wilson, Smith-Tamaray, & McAllister, 2011) as well as cultural and linguistic factors (Marshall, Goldbart, & Phillips, 2007; Ou, Chen, Garrett, & Hillman, 2011). These factors impact on people in both Majority and Minority World countries (see Table I). The nature of under-served populations may differ between Majority and Minority World countries, and these differences are canvassed in the next section.

Table I. Barriers to accessing speech-language pathology services.

Type of barrier	Examples from Majority World	Examples from Minority World
Structural:
Is there a service in place?	· Following a stroke, there is no follow-up rehabilitation service post-acute hospital discharge.	· School children with language disorders are unable to access public health services due to the prioritization system in place.
Is it physically accessible?	· A child with cerebral palsy is unable to use public transport to access the only therapy service.	·Chronic staffing issues mean that therapy positions have been unfilled, resulting in long waiting times.
Geographical:
Are the services accessible within a reasonable distance?	· Communication therapy services are available in the capital city only.	· Rural and remote clients need to travel extensive distances to receive therapy.
	· No local CBR program targeting communication disability.
Financial:
Are the costs of accessing a service manageable?	· To access government services patients need to pay for a hospital file.	· With limited public services, only the more affluent or insured in the community are able to afford a private service.
	· Families take time away from earning a subsistence living to seek therapy.
Cultural/linguistic:
Does the service match or incorporate a client's cultural traditions and beliefs? Are there language differences between provider and client which result in difficulty communicating effectively?.	· The SLP is from a Minority World country and speaks only English and a little local language. · There is a cultural mismatch between the therapist and community—childrearing practices, language, beliefs about disability, limiting engagement of the community.	· Lack of SLPs representing minority groups. · Little culturally relevant information about communication issues available to NESB communities. · Difficulty accessing interpreting services.

CBR, community-based rehabilitation; SLP, speech-language pathologist; NESB, non-English speaking background.

Under-served PWCD in majority world countries

The availability of disability and (re)habilitation services in the Majority World is frequently severely limited and dependent on each country's economic position and social and health policies. Approximately 80% of the global population with disabilities resides in the Majority World (United Nations, 2008), yet health and rehabilitation professionals to meet the needs of these people with disability are in short supply (Anyangwe & Mtonga 2007; Gupta, Castillo-Laborde, & Landry, 2011; World Health Organization, 2006). Haig, Im, Adewole, Nelson, and Krabek (2009, p. 1036) highlighted this as follows:

the chances that a disabled child in Africa receives the quality of care that children all over the rest of the world receive are similar to the chances that an Antarctic penguin is fed a mackerel by a Physiatrist.^4,5

Speech-language pathology services are often not in the forefront when new rehabilitation services are developed for people with communication disabilities in the Majority World. A review of the speech-language pathology workforce across four countries in sub-Saharan Africa showed ratios of 1 SLP per 2–4 million people, compared to ratios of 1 SLP per 2500–4700 people for the US, UK, Australia, and Canada (Wylie, McAllister, Marshall, Wickenden, & Davidson, 2012). Alternative service models, including generic rehabilitation workers and community-based rehabilitation workers, have been used to attempt to meet the needs of PWD, including PWCD. Despite these efforts, only 26–55% of PWD surveyed across four Southern African nations reported receiving any medical rehabilitation, and the majority of this rehabilitation was reported to be for physical disabilities (Eide & Loeb, 2006; Eide & Yusman, 2009; Eide, Nhiwathiwa, Muderedzi, & Loeb, 2003; Loeb & Eide, 2004).

Even when speech-language pathology services do exist in Majority World countries, some groups remain particularly vulnerable to problems accessing services and support, including minority language and culture groups, rural and remote inhabitants, women, elderly, and those with low incomes (World Health Organization and the World Bank, 2011). Interestingly, the advent of medical tourism means that PWCD may be amongst the increasing numbers of affluent citizens of Majority World countries who are seeking health and rehabilitation services in another country (Whittaker, Manderson, & Cartwright, 2010).

Under-served PWCD in minority world countries

Minority World countries also have failed to achieve equity in service provision for PWCD. Those living in rural or remote regions have less access to speech-language pathology services than their urban-based counterparts (Graham & Cameron, 2008; Verdon et al., 2011). Economic models of healthcare based on a non-universal healthcare policy⁶ restrict access to services for people with fewer economic means (Benedict, 2005) and minority groups, transient, migrant, and indigenous populations continue to have unmet need for services (Ou et al., 2011; Stow & Dodd, 2003; Winter, 2001) and experience poorer health and educational outcomes (Elwan, 1999; World Health Organization and the World Bank, 2011).

Unmet need and under-served PWCD are not just problems for the Majority World countries. The prevalence and growing numbers of PWCD around the world and the barriers they experience to accessing services demand from our profession significant changes in how we conceptualize, design, and deliver services for PWCD. An understanding of change theory can assist us to achieve these changes.

Using change theory to influence equity in service provision for PWCD

The World Report on Disability offers SLPs a tool for effecting significant change in thinking about service provision to PWCD. Using the World Report on Disability effectively to improve the lives of PWCD requires SLPs to understand change processes in public policy⁷ implementation. This section considers how the use of organizational change theory might enable us to use documents such as the World Report on Disability to effect change at an individual level, and in our workplaces and professional practices.

Consistent with the World Health Organization's mandate to recommend but not enforce or implement change, the World Health Organization produces documents to guide thinking and discussion on health-related issues and influence the actions of governments and organizations world-wide, to achieve better health and wellbeing for people (Shiffman, 2009). SLPs who are able to use documents such as the World Report on Disability and the ICF effectively can become “disability policy change agents” (Silverstein, 2010, Silverstein, p. 174). This change might, however, be slow, and strategy and persistence will be required.

Evolution, gradual change

A multitude of factors influence change in organizations, and public policy change is no exception (Irvine, Elliot, Wallace, & Crombie, 2006). Disability policies and practices have evolved gradually across previous decades in response to a number of pressures (Silverstein, 2010). An example of this evolutionary shift is the response towards embracing the ICF framework (World Health Organization, 2001). Although the ICF has been embraced in service provision for PWCD in some areas of practice, for example after stroke (see for example Worrall, Sherratt, Rogers, Howe, Hersh, Ferguson, et al., 2011), the medical model of rehabilitation continues to retain a strong base of practice in other areas of speech-language pathology practice. The challenge remains as to how holistic management of PWCD can address a person's communication impairment as well as participation in life, and include a focus on environmental factors. Shifting to a model of communication disability under-pinned by the ICF, such as that proposed by Hartley and Wirz (2002), requires a shift in thinking to a biopsychosocial model of disability. Whilst the Hartley and Wirz model was developed with the Majority World in mind, there is every reason to apply this model universally, with particular benefits to sub-groups of PWCD in the Minority World who are currently under-served.

The driving forces (and resistances) which shape change are complex. Lewin (1951), one of the founding fathers of change theory, asserted that change is a result of an imbalance of forces exerting pressure on an organization to change (driving forces) or to resist change (resistance forces) (Figure 1). Organizations change when the driving forces are stronger than resistance. If a new idea or concept comes along, and there is little resistance (in terms of history, inertia, or other political pressure) then the idea may be easily adopted into policy and practice. However, if resistance exists then the new idea may never be adopted.

Drivers of change may be seen as internal or inside the organization (e.g., staff, board of directors, consumer representatives), whilst others may be external to the organization (e.g., community demand, government policy) (Burnes, 1996) (see Figure 2). There has been recent recognition that internal and external drivers of change have subtle linkages, with external drivers (in this case items such as the World Report on Disability) frequently impacting internal drivers (e.g., therapists’ expectations) (Oakland & Tanner, 2007). So that, whilst the push for change may be seen to be coming from within the organization, frequently this has been an impact of something which has occurred outside the organization.

Figure 1. Simple representation of Lewin's (1951) force-field model of change.

Figure 2. Visual representation of internal and external drivers of change.

Sources of influence to drive change

Price (2009) further breaks down the types of change drivers and forces reflecting the degree of proximity to the service or organization under consideration (see Table II):

Table II. Classification of drivers and examples of disability policy drivers, using levels proposed by Price (2009).

	“Distance” and loci from organization	Examples of possible drivers of disability policy
Macro-level	External, distant	Global documents (such as International Classification of Functioning, Disability, and Health: ICF, World Report on Disability); practices in peer countries.
Meso-level	External, close	Government policy, disability agencies, community expectation, professional organizations (i.e., ASHA, SPA, RCSLT).
Micro-level	Internal	Staff vision and preference, board of directors, consumer representatives.

ASHA, American Speech-Language-Hearing Association; SPA, Speech Pathology Australia; RCSLT, Royal College of Speech and Language Therapists.

(1) Macro-level—external forces which are distant from the organization;

(2) Meso-level—external forces which are close to the organization; and

(3) Micro-level—factors which are within or internal to the organization.

There is little doubt that documents such as the ICF and the World Report on Disability are macro-level drivers of change to disability policy and services. Consistent with Oakland and Tanner (2007), they also appear to influence drivers at other levels, such as influencing governments and professional organizations (such as the American Speech- Language-Hearing Association, Speech Pathology Australia, and the Royal College of Speech and Language Therapists) and other key organizations and communities at the meso-level. In addition, through tools such as publicity and encouragement of debate in the literature, these documents can influence individuals within the organizations themselves (micro-level). Meso- and micro-drivers sit closer to the organization with potentially more direct ability to exert force to change policy.

The Salamanca Declaration (UNESCO, 1994) and the Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006) are examples of how public awareness can influence policy and practice. These two documents now underpin much of the dialogue in disability consumer groups, particularly in the Majority World. Whilst the World Report on Disability is not a ratified convention (such as the CRPD), it is hoped that the issues raised within it will similarly compel and enable consumer and professional groups to increase their lobbying and research efforts. Already there have been a number of publications and discussions in the literature of the World Report on Disability including a special issue planned for the journal Disability and Rehabilitation. With this level of discussion and debate, the World Report on Disability is likely to have influence on opinions of both professionals and consumers, and impact change on service organizations across all levels.

SLPs have important choices as to how they can play a part in such a policy shift, becoming micro-level (via their organizations) and meso-level (via their professional organizations) forces for change. Without such collective activism, the change to a broader-based, more holistic view of communication disability will not become reality.

Approaches and issues in service delivery

If we are to meet the needs of under-served PWCD our approaches to service delivery must change. Factors which influence our current approaches to service delivery need to be understood so that as a profession we can critique the strengths and limitations of current approaches, and think creatively about new approaches which might better address needs and achieve equity in service provision for PWCD, as well as enable appropriate responses by the profession of speech-language pathology to the World Report on Disability.

It is generally understood that there are three dominant models in relation to disability services: medical, social, and biopsychosocial. The latter is congruent with the ICF (World Health Organization, 2001), which provides a framework for service delivery that is responsive to addressing the holistic needs of PWCD. The ICF is influencing new ways of thinking about communication disability and measuring outcomes (see for example McCormack, McLeod, Harrison, & McAllister, 2010; Thomas-Stonell, Oddson, Robertson, & Rosenbaum, 2009). Historically, speech-language pathology services have focused on impairment, but increasing evidence suggests activity and particularly participation are priorities for clients, including family members (Worrall et al., 2011). Additionally there is a growing awareness of environmental and personal (contextual) influences and resulting interest in culturally competent practice (Isaac, 2002; Marshall, 2003). The choice of a model for service delivery and actual approaches to such service delivery for individuals, groups, or populations is influenced by a range of aspects, as outlined in Table III. Review and development of speech-language pathology services demand attention to the following aspects.

Table III. Aspects of service delivery.

	Aspects of service delivery
Cultural appropriateness of service	For an individual
	For a family
	For a community
	For a population
Sector delivering service	Public/government
	Private Sector (for profit)
	Non-governmental organization or charity
Geographical domain	Urban services
	Rural services
	Remote services
Location of service	Institutional (e.g., hospital, school)
	Community centres (e.g., health centre, polyclinic, CBR program)
	Domicile
	Public domain (e.g., through health promotion messages)
	Remotely (e.g., via home program or telehealth)
Agent of delivery of intervention	Qualified SLPs
	Mid-tier workers trained to work with one group of people with communication disability (e.g., locally trained workers in Majority World countries supporting children after cleft repairs: rehabilitation training provided by “fly-in” teams from Minority World countries).
	Already qualified professionals trained for an additional, new role (e.g., rehabilitation technicians in Zimbabwe, Bourke-Taylor & Hudson, 2005; Winterton, 1998).
	Other professionals guided by SLPs (e.g., teachers, nurses, delivering in-class or on-the-ward programs).
	Family members (e.g., parents, spouses, sibling or other carers), guided by SLPs.
	Disability care workers (e.g., in residential care environments).
	Traditional healers (e.g., faith healers in South Africa, Semela, 2001).
Level of intervention	Primary: Focus is on prevention through population public health or community level health promotion activity, or individual level education for “at risk” groups or individuals. Content may cover communication, developmental techniques, and methods of supporting the development of communication. The goal of primary prevention can be described as “the reduction in the incidence of an established disease condition in the population” (Simeonsson, 1991).
	Secondary: For example: Early identification, early intervention (e.g., early stuttering therapy), parenting education programs for children with behavioural or developmental concerns and restoration of health.
	Tertiary: Focus is on habilitation and rehabilitation; minimizing functional and lifestyle impacts of an established disease or condition once it has occurred. Treatment aims to (re)habilitate the individual and/or to work with the community to minimize the impact of the disability. Also referred to as “specialist” services (Simeonsson, 1991).
Recipients of intervention	Individual.
	Immediate circle (e.g., family, friends).
	Paid or voluntary workers.
	Wider community.
Focus of intervention—levels of ICF	Impairment (body structures and functions).
	Activity.
	Participation.
	Environmental and personal (contextual) influence.
Responsivity of service	Service is available when the PWCD needs it.
	Service dictates availability and timing of provision.
Continuity of services	Continuous (well established and well-funded services).
	Sporadic (e.g., workforce unavailable due to recruitment difficulties; outreach services; services delivered by volunteers who leave (see for example D’Antonio & Nagarajan, 2003)).
Sustainability of service	Financial support, structural arrangements (e.g., employment, career), service management, planning in place for ongoing (and developing) service delivery.
	Short-term funding, provision not embedded within services (e.g., isolated cadre of trained workers), lack of career structure and/or management, strategic planning lacking.
Rationalization of services	Services are organized such that all PWCD are equally able to access services at the point at which they need them (Body & McAllister, 2009).
	Services are inequitably organized, e.g., availability is influenced by factors such as PWCD's age, gender, disability status, cultural group, socio-economic status, or location.

PWCD, people with communication disorders; ICF, International classification of functioning, disability and health; SLP, speech-language pathologist(s); CBR, community-based rehabilitation.

The aspects listed in Table III are not intended to be an exclusive or hierarchical listing; nor are the categories non-interacting. However, we have placed cultural appropriateness of a service first in the table because of its importance to the delivery of services that will be meaningful to and accepted by PWCD. Services may be unavailable in the appropriate languages and/or based on assumptions that are not congruent with service users’ explanatory models (Marshall et al., 2007). Services ideally should be designed to account for major cultural groups and the most visible forms of cultural variation, and be designed to elicit the cultural views and needs of individuals with communication disorder, their families, and carers, and be responsive to those expressed views. In the Majority World, the lack of locally educated SLPs means that many services available may be delivered by expatriates or volunteers with a Minority World view of what constitutes an acceptable service. Even if locally educated SLPs are available, they may be working with people from cultural, linguistic, or tribal groups other than their own (Bourke-Taylor & Hudson, 2005; Marshall & Jones, 2011). Until the graduation of the first cohort of locally educated speech therapists in Uganda in 2010, services were routinely provided by foreign educated volunteers (Marshall & Jones, 2011). This difference in world views is a common situation encountered in services for indigenous populations in Minority World countries also; for example, fewer than 0.1% of the speech-language pathology workforce in Australia in 2004 was of Aboriginal and Torres Strait Islander (ATSI) descent (Lowe & O’Kane, 2004); ˜ 2.3% of the Australian population are of ATSI descent (Australian Bureau of Statistics, 2008). Services for Indigenous Australians are therefore typically delivered by non-Indigenous SLPs.

Aspects influencing service delivery do interact. For example, Gascoigne (2006) refers to the interaction between lead provider (agent of service delivery) (e.g., a clinic-based speech-language pathology or school support staff member) and intervention provided (impairment or participation level). The agent delivering a speech-language pathology service is an important consideration in developing and delivering services for PWCD. Threats (2009) commented on the territorialism of SLPs in the Minority World in protecting their turf from mid-level workers, including speech-language pathology assistants. In many Majority World contexts, mid-level workers may be the only option for speech-language pathology service delivery. The type of intervention agent is not always explicitly discussed when services are being planned. Robinson, Afako, Wickenden, and Hartley (2003) described the process of addressing the type of worker needed prior to the establishment of speech-language pathology training in Uganda. In the absence of formal speech-language pathology services, support for PWCD may be provided by other health, education, or social care workers, or by traditional healers (Semela, 2001), teachers, or other qualified health professionals such as occupational therapists.

The level of intervention targeted and the intended recipients of speech-language pathology services also interact. Bronfenbrenner's (1994) ecological model of human development is useful for considering how to design and deliver speech-language pathology services for people who support the PWCD. The aspects listed in Table III may also interact to determine cost and reach of services. Medical model, institutionally- located, tertiary and direct therapy services are likely to use more speech-language pathology resources per person served and, thus, particularly in resource-poor countries, limit reach to PWCD, in comparison to social model, community-based, primary, and indirect services which can reach more PWCD.

This section has discussed models of service delivery in speech-language pathology and aspects which influence appropriate and comprehensive service delivery for PWCD. Dominant models of service delivery and the interaction of aspects of service delivery interact to create a situation where current services to PWCD and their communities are not meeting the needs of all PWCD, either in Minority or Majority World countries. Services may have insufficient capacity to provide for or reach those in need (McAllister & Wylie, 2011), or may be culturally inappropriate or limited in other aspects. When new services for PWCD are introduced, particularly in Majority world countries, models and approaches to service provision (and education of providers) may be “imported” from Minority World countries with relatively little adjustment or careful consideration can be given to addressing the needs of PWCD and the population at large. It is important for the speech-language pathology profession to critically reflect on appropriate service delivery approaches to best serve the needs of all PWCD and to assess each new context individually, rather than replicating previous models. What is best and appropriate may not always be the most frequently used model. Developments in countries where speech-language pathology services are currently limited or non-existent are well placed to develop new service delivery models and approaches to meet the needs of their populations, and which may in turn be beneficial to Minority World countries, especially in times of financial constraints and challenges in addressing increasing rates of chronic illness and ageing populations.

Challenges and opportunities from the World Report on Disability in relation to people with communication and swallowing disability

This section has a focus on the opportunities and challenges for people with communication disability and the role of speech-language pathologists as agents of change and as a resource to people with communication and swallowing disability and their families and carers. The imperative for change is discussed in response to the nine recommendations from the World Report on Disability.

The biggest challenge for people with communication and/or swallowing disability is to be “heard”. Not only are physical and sensory disabilities (of vision and hearing) better known throughout the world, but, as evidenced in the World Report on Disability, these disabilities take prominence in the reports and discussions on services and need. It is an irony that those groups who need “a voice” have a disability that inhibits their speaking out. A communication disability creates a major challenge for self-advocacy to be achieved. Thus, the challenge for the community of a PWCD and for the speech-language pathology profession, is to find ways to achieve increased political and public awareness of the social and personal impact of communication disability and to advocate for services that are accessible and equitable for children and adults who live with communication and/or swallowing impairment (whether this be temporary or ongoing). The World Report on Disability provides a strategic opportunity to raise the “voice” of and for those with communication disability. The efficacious treatment LSVT^® Loud (Ramig, Sapir, Fox, & Countryman, 2001) serves as a tangible example, and as a metaphor, of the effectiveness of increasing the voice of people with Parkinson's disease to achieve increased speech intelligibility and communicative effectiveness.

Public understanding of communication disability requires targeted and sustained education about the nature of communication disability and the upskilling of all to be competent communication partners for those with communication impairment (Kagan, 1998). Public understanding also demands appreciation of cultural and linguistic diversity in relation to health and disability and the need to explore the experience of communication difference within a cultural context. Listening to families and people with communication disability from different cultures (in their home countries and in migrant communities) (see for example Roulstone & McLeod, 2011) and involving them as key stakeholders in service development and delivery will challenge service providers to address the prioritized needs of clients in a culturally appropriate manner.

Speech Pathology Australia (SPA), in partnership with New Zealand Speech Therapy Association (NZSTA), the Royal College of Speech and Language Therapists (RCSLT), the American Speech-Language-Hearing Association (ASHA), and the Irish Association of Speech and Language Therapists (IASLT) are working to have 2014 recognized as the International Year of Communication, an excellent opportunity to profile the diversity and needs of PWCD. This initiative provides distinct opportunities for action at an international, national, and community level, and for dialogue focused on collaboration across nations between Majority and Minority World countries.

Table IV details levels of change in relation to the recommendations of the World Report on Disability (World Health Organization and the World Bank, 2011). In the table the authors have addressed ways in which SLPs may engage with change (according to the levels proposed by Price, 2009). This section serves to prompt debate and discussion on important issues for PWCD.

Table IV. Change in response to recommendations of the World Report on Disability.

	Level of change (Price, 2009)
Recommendations from the World Report on Disability	Macro*	Meso	Micro
1. Enable access to all mainstream systems and services		X	X
MESO: Government policy promoting equity of service access, especially for under-served groups of PWCD. SLPs can ensure that service equity is on the agenda through activism within their professional and other associations.
MICRO: Services and staff review of access issues within their own services. Clinically this may mean adapting practices or adopting alternative service models. For example: (a) Are our operational clinical priorities equitable and evidence-based? School-aged children are sometimes excluded from accessing government funded hospital-based services—does this comply with an evidence base or is this historical? (b) Why are some members of our community not accessing speech-language pathology services, and how can services address the needs of these under-served groups of PWCD? For people with communication disability there is the challenge to make policy and healthcare information accessible. The research of Worrall, Rose, Howe, McKenna, and Hickson (2007) has illuminated the need for an evidence base for accessibility for people with aphasia. Following this example should we be working more at a participation level on behalf of our clients?
2. Invest in specific programs and services for people with (communication) disabilities		X	X
MESO: This is principally around government decision-making, yet national associations have a strong role to play in these processes. For example: In the Australian context, the national professional association provided important input into the proposed National Disability Insurance Scheme, and meets regularly with politicians and government departments with mandates for provision of services to PWD. MICRO: (a) Clinicians and services invest time and energy in determining the needs of under-served populations, and consider alternative ways to deliver services to these groups? (b) Are specific funding grants pursued to address the needs of the hard-to-reach groups, and are alternative approaches considered?
3. Adopt a national disability strategy and plan of action		X
MESO: Professional and disability organizations lobby the government to put their own interests on the national policy agenda, for example Speech Pathology Australia (2011) has being an “influential organization” as one of its key strategic objectives.
4. Involve people with disabilities			X
MICRO: Examples of such work include UK Connect which priorities active citizenship by people with aphasia; SLPs may: (a) engage the local community of PWCD about service priorities and rationing (see for example Roulstone, 2009); (b) call for educators to include PWCD in their educational programs as student tutors; (c) SLPs ensure they consult with PWCD regarding satisfaction with services, new services or changes to service delivery models; and (d) Individual SLPs should consider whether they support PWCD wishing to express their needs (e.g., consumer advocate roles in the UK National Health Service).
5. Improve human resource capacity		X	X
MESO: Governments and professional organizations engage in workforce planning and needs analysis. This includes initiatives to extend the reach of SLPs in minority world countries and provide access to communication therapy services in majority world countries. Professional bodies and individuals work with governments, funders, and services to expand their role and responsibilities at an international level in enhancing services for PWCD in countries with limited service in a sustainable and capacity-building approach. MICRO: Organizations and providers adopt an equity and human rights stance on communication disability; and examine alternative models of intervention, which may require consideration of different solutions to meet the needs of PWCD. To improve human resource capacity calls for improvements in pre-entry education and professional practice to ensure SLPs have the skills needed to engage and educate families, carers, teachers, and others in effectively supporting PWCD. Attitudinal shifts may be required to support the training of mid-level workers (a major recommendation of the WRD).
6. Provide adequate funding and improve affordability		X
MESO: Government and policy agents engage in development of funding models to ensure equitable access for under-served people with communication disability. Professional organizations may lead the debate on economic models for people with communication disability which promote service equity.
7. Increase public awareness and understanding		X	X
MESO: SPA in partnership with NZSTA, RCSLT, ASHA, and IASLT are working to have 2014 recognized as the International Year of Communication, an excellent example of profiling the diversity and needs of PWCD. MICRO: A number of philosophical issues require further clarification for professionals and services: (a) What is the role of speech-language pathology in raising public awareness? What role do SLPs have in primary prevention and public health? (b) Do SLPs have a role in targeted primary prevention for high risk groups? (c) Do we promote the issues of communication disability or of the profession? (d) Is there a role for a public health speech-language pathology similar to a public health nutritionist who works at the level of primary prevention and health promotion? What are the ethics of promoting awareness and activism in communication disability if there is no existing infrastructure or support for services to follow-up once needs are identified?
8. Improve disability data collection	X	X	X
MACRO: Global organizations and leaders focus on planning for more streamlined disability data collection. Obtaining appropriate methods for recording and measuring communication disability is crucial to understand the profile and needs of populations with communication disability (Mulhorn & Threats, 2008). MESO: Professional organizations take a critical role in this field (e.g., SPA has lobbied for inclusion of relevant items on PWCD in the national census). MICRO: Ensuring that service data is used in a functional way is vital to ensuring that services are monitored and evaluated (e.g., SLPs examine their own service data in comparison to population data of their region or area to identify groups of under-served (see Stow & Dodd, 2003)).
9. Strengthen and support research on disability	X	X	X
MACRO: International research agendas sponsored by a collaboration of professional organizations or other international agencies will contribute powerful data and tools to ensure communication disability is recognized, and to become powerful change drivers. MESO: The need for evidence-based practice is a siren call for our profession, and research into the reach, equity and quality of speech-language pathology services could from a core body of research in response to this recommendation MICRO: Individual SLPs can also commit to supporting the research of others by assisting with recruiting participants and data for ethically-approved research studies.

NZSTA, New Zealand Speech Therapy Association; RCSLT, Royal College of Speech and Language Therapists; ASHA, American Speech-Language-Hearing Association; IASLT, Irish Association of Speech and Language Therapists; PWCD, People with Communication Disorders; SLP, speech-language pathologist(s).

*In this context Macro is considered at an international/global context.

Concluding comments, and an invitation

In this paper, in drawing on the new prevalence data available in the World Report on Disability, we have highlighted the estimated numbers of PWCD around the world and have argued that these figures are likely to represent an under-estimate of prevalence, due to issues in how communication disability is conceptualized and counted. We make the case for SLPs to engage with epidemiological studies of communication disability. Only with accurate and meaningful data that reflects activity and participation, as well as impairment levels of the ICF, can SLPs become advocates for PWCD. We noted that PWCD are not foregrounded in the World Report on Disability and that, without such recognition, development of appropriate services for PWCD will be hampered. We noted that many PWCD people are not served or are under-served with respect to services or support for their communication disability. Who is under-served and reasons why this may be the case, for PWCD, in both the Majority and Minority Worlds were considered. A range of structural, geographical, financial, cultural, and linguistic barriers to equitable access to services for PWCD were discussed.

We considered several aspects of service delivery for PWCD, which may promote or impede equity in access to services and support. We argue that, for the speech-language pathology profession to seriously address the under-served PWCD and meet their needs in a holistic way, we must design new approaches to service delivery. Services must be culturally relevant, holistic, accessible, sustainable, and responsive, and give due consideration to the types of service recipients, the level of intervention targeted, and the agent of service delivery (see Table III). We hope that contributors will reflect on this section, offer critique, identify gaps, and propose alternative frameworks and creative examples which illustrate more equitable service delivery approaches for PWCD.

Because speech-language pathology services in Minority World countries are not meeting the needs of all citizens with communication disability, we caution against importing inappropriate and inadequate models of service delivery for PWCD into the Majority World, and suggest that new models and approaches must be created. One model (there will be others) designed around the biopsychosocial model and the ICF (Hartley & Wirz, 2002) for service developments in Majority World countries would be equally applicable to Minority World countries, which are similarly failing or unable to deliver equitable services to PWCD. We suggest that SLPs in Minority World countries would have much to learn from service developments in Majority World countries. The frameworks and principles of Knowledge Transfer and Exchange (Kagan, Simmons-Mackie, Gibson, Conklin, & Elman, 2010) can inform such two-way learning. We invite respondents to this article to provide examples of other relevant models and service delivery approaches, as well as examples of knowledge transfer and exchange between Minority and Majority World settings which might help meet the needs of under-served PWCD.

To meet the needs of the growing number of under-served PWCD, we must seriously consider the recommendations of the World Report on Disability. Some of them could lead to profound change in our profession if pursued. We must debate what it is that our profession wants for PWCD: more SLPs or more speech-language pathology services—perhaps delivered by others? A number of the World Report on Disability recommendations compel SLPs to stop thinking about caseloads and start thinking about populations. Are we ready and indeed are we able to do this as a profession? We welcome discussion of the World Report on Disability recommendations in the invited papers to this forum. Where should our profession focus its energy for change: at the level of primary, secondary, or tertiary intervention? Is there a role for a public health speech-language pathology? We would hope that contributors to this scientific forum will offer debate on our propositions and extend our ideas further.

Notes

(1) The terms “communication disability” and “people with communication disabilities (PWCD)” will be used to represent individuals experiencing communication issues impacting their ability to participate fully in everyday activities (cf. Hartley, 1998). This group may include people whose primary issue is communication (such as an individual with specific language impairment or who stutters) or people with communication issues secondary to another disability (e.g., cerebral palsy or Parkinson's disease).

(2) Majority World refers to countries which comprise the majority of the world's nations—and who were previously termed “less developed countries” (LDCs) (Majority World, 2011; Marsh, Keating, Punch & Harding, 2009).

(3) Minority World refers to countries which comprise fewer of the world's nations—and who were previously termed “more developed countries (MDCs)” (Majority World, 2011; Marsh et al., 2009).

(4) In spite of the controversy around the use of this quotation, it has been intentionally used to clearly illustrate that access to “medical” or “impairment-focused” models of rehabilitation is extremely limited in the Majority World.

(5)A Physiatrist is another name for a Rehabilitation Medicine Specialist.

(6)Universal healthcare is healthcare that is available to all citizens of a country at no cost at the point of service.

(7) In this context—which is primarily concerned with SLPs and their role in communication disability—health and disability policy will be considered at one entity (public policy), as frequently rehabilitation or habilitation services are operated from within a health services organization.

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