A perspective from Bolivia on the implications of the World Report on Disability for people with communication disabilities

Abstract

Implications of the World Report on Disability for people with communication disabilities (PWCD), as described by , include a drive for better demographic information, increased campaigning, and organizational change to improve speech-language pathology services. Qualitative data collected from PWCD and their families in Bolivia provide the baseline for this response. The benefits of collecting population survey information are recognized, but data reinforce the continued need to ensure a positive impact at caseload level. In a country where rhetoric is far removed from lived experience, the starting points for change are very different from those in Minority world countries. A supply and demand model is suggested as an equitable way of balancing efforts to overcome barriers to a better service. Knowledge and information are shown to be key in catalyzing the demand side for the service, while the importance of a solid evidence base for practice would help to improve supply. Although a warning against importing dominant Minority world models of service delivery is outlined by Wylie et al., findings from Bolivia support a more hybrid and nuanced approach that takes into account complex global influences of information flows, past and present.

Keywords::

• World Report on Disability
• World Health Organization
• Bolivia
• people with communication disabilities

Introduction

The World Report on Disability (World Health Organization and The World Bank, 2011) provides a springboard for debate among people with disabilities, their families, professionals, and the wider public. Wylie, McAllister, Davidson, and Marshall (2013), in their lead article, address some of the specific issues pertinent to people with communication disabilities (PWCD) that arise from the World Report on Disability (World Health Organization and The World Bank, 2011). The article underlines the need for better demographic information and increased campaigning alongside a model for organizational change that also comes with a warning about importing inadequate service delivery models from Minority to Majority world countries.

While Wylie et al. (2013) take a global overview, this response will consider the lead article through a Latin American context. Data are used from a qualitative review of speech-language pathology services in Bolivia stemming from a series of semi-structured interviews carried out with a range of 21 local stakeholders (Buell, 2009). These included family members, health professionals, representatives from disabled people's organizations, non-governmental organizations, mainstream and special education, and national government. A central theme arising from the data related to the lack of knowledge and skill available for PWCD and their families. The study was commissioned by the United Nations Association International Service (UNAIS), a British international non-government organization (NGO) focusing on disability.

Bolivia is a country of diverse geography and people. Landlocked on all sides by neighbouring Latin American countries, it boasts the mountains of the high Andes and also the rainforest of the Amazon. It covers an expanse of 1.1 million square kilometres and the latest United Nations Development Programme (UNDP) (2011) report estimates it to have a population of 10 million people, 64% of whom live in urban centres. In the 2001 Census (INE, 2001), 62% of the population identified themselves to belong to one of more than 30 indigenous groups, of which Quechua (31%), Aymara (25%), and Guaraní (1.5%) were the largest. Sixty-three per cent of the population stated they had learned to speak a language other than Spanish as their mother tongue. Despite this, Spanish is socially recognized as the urban language of business, health, and education. Bolivia has gone through cycles of violent social and political unrest over the last decade. Several leaders have come and gone in the last 10 years, culminating in the rise to power of Evo Morales in 2005, the first indigenous left wing president. Bolivia ranks 108 on the Human Development Index (UNDP, 2011) and is classed as a lower middle-income country on World Bank (2011) development indicators. However, the levels of inequality are substantial and rising. Sixty-three per cent of the population live below the national poverty line (UNDP, 2011). According to the Department for International Development (DFID, 2000), people with disabilities will make up ˜ 20% of this poorest group.

There is little consensus on the number of speech-language pathologists registered to practice in Bolivia. (The term speech-language pathologist (SLP) will be used throughout this article in place of fonoaudiologo/a for which there is no direct translation into English.) There are reported to be around 60 registered SLPs in Bolivia (Buell, 2009), most of whom are working in urban areas. At the time of interview, only three SLPs were working with government salaries from the Ministry of Health and the majority of speech-language pathology treatment is still private and costly. There is no established technical or degree course in speech-language pathology in Bolivia, and, although there is an established Bolivian College of Speech-Language Pathology, it is weak, with little executive power and meagre control over the standards of practice (Buell, 2009).

Towards a population based approach

Reliable statistics on the numbers of disabled people in Bolivia are difficult to find, and specific information about people with communication disability across the population is non-existent. The census in 2001 contained three questions and responses provided some numerical data on deaf, blind, and “paralysed” people in different provinces (Index of National Statistics, INE, 2001). A more positive move forward is marked by questions in the most recent census (INE, 2012) from which data is currently unavailable. Four questions were asked relating to any perceived “permanent difficulty” with sight or hearing, communication and mobility, and memory. While these questions loosely cover sensory, physical, and cognitive disabilities, they do not attempt to address the wider definitions of disability used by the Pan American Health Organization and World Health Organization (2006, cited by Barron & Amarena, 2007). As with previous statistical surveys in Bolivia, it is doubtful that all people in rural and outlying communities have been included due to the time and geographical constraints of reaching them on census day. The Inter-American Development Bank (MECOVI, 2005) has created a number of comparative statistical estimates such as the percentage of disabled women vs men, the number of poor vs moderately poor disabled people, and the spread of different disabilities across provinces. However, these are rendered virtually meaningless due to the lack of numerical, geographical, or methodological information available about how their sample of disabled people was recruited. Furthermore, their disability data is based on one single question: “Does anyone here have a permanent disability?”

Without adequate systems and infrastructure it is unlikely that accurate data can be gathered. While Wylie et al. (2013) call for clearer data about the prevalence of communication disability, it is unclear in a country like Bolivia how this would be gathered. Ensuring that communication disability questions are included in existing surveys and censuses is a start and is crucial for shaping services in speech-language pathology. However, it is also wise to recognize that facts and figures and even legal documentation can often have little impact on people's daily lives. Article 36 in the Bolivian Law for People with Disabilities (2012) is dedicated to “communication”. While this could signal changes for PWCD, these are unlikely to take place in a short timeframe. Meekosha and Soldatic (2011, p. 1394) make the observation that “rights for disabled people in the global South are extremely complex and the lived reality is often distant from the legal rhetoric”. Working together in partnership with communities through participatory rural appraisal to gather qualitative and quantitative data could be a more effective and sustainable way of ensuring that the process of collecting data is also laying the ground for sustainable speech-language pathology services (Gona, Xiong, Muhit, Newton, & Hartley, 2010).

Raising awareness

The lack of access to knowledge and information about communication disabilities was a recurrent refrain in the Bolivian data (Buell, 2009). When there is no other information readily available, PWCD in Bolivia and their families will often believe the erroneous information given to them. The process of knowledge-gathering begins at the point of diagnosis.

... they didn't take much interest for about 5 years in the public hospital. I trusted them ... “It's mild” they said, “don't worry. She'll talk soon and walk—she will do it”. Finally yesterday I found out that it's not mild … her disability is very severe; we don't know what to expect of her (Mother; Buell, 2009, p. 13).

The Bolivian participants in this study wanted specialized, specific, practical information to improve the lives of the people that they lived and worked with. The World Report on Disability makes clear the need for continued rehabilitation work that is client-centred and of a high quality. Creating a more focused and knowledgeable starting point for PWCD and their families can help to develop a better and more realistic demand for the service. Within a model of organizational change, raising awareness can be seen as increasing an external “driver” for change (Wylie et al., 2013). However, in countries where there are few resources and very little access to reliable information and knowledge, there is a danger that external funding is channelled into high profile campaigning designed for the public arena, leading to less investment in building skills and knowledge for client-based intervention. Raising awareness should be part of a development process to improve the quality of case-based work rather than siphoning funds away from it. One way of supporting a more dynamic approach is to establish and maintain networks.

Many participants in the Bolivian study (Buell, 2009) were involved in local support networks: for aphasia, autism, and Down Syndrome specifically. Some networks were strong initially and then found difficulties in sustaining their work. This was often the result of a lack of knowledge and financial support.

It's the scarcity of valid information … valid for real life, not from compassion, not from pity. It's like they want to hide it from you … or disorientate you (Mother of a child with Down Syndrome; Buell, 2009, p. 13).

Yes, it took me 5 years to get her to talk. I've spent a fortune on the speech-language pathologist … Like my friend says, she took her for 30 minutes, charged a huge amount, three times a week. She went in with her workbook, she wrote in it what we had to do ... that was it ... (Mother; Buell, 2009, p. 16).

Not only was it difficult for families to find extra time to organize meetings and to attend them, they were also subject to social pressures.

And someone said—why are you worrying about this child, he won't give you anything tomorrow. You should worry about the healthy ones ... That's what the doctors say ... (Mother in support group; Buell, 2009, p. 11).

To be sustainable, support groups need more practical information about communication disabilities. In Bolivia, the best information might not always come from a speech-language pathologist. Relevant advice and help in the area of communication might equally come from a mother, a teacher, or a neighbour. Miles, Fefoame, Mulligan, and Haque (2012) explore the pros and cons of networking in education for children with disabilities in Bangladesh and promote the importance of knowledgeable mentors. The wider impact is one of contextually appropriate awareness raising and specific information sharing. Such networks are easier to achieve in densely populated countries such as Bangladesh (Miles et al., 2012) and could be harder to develop in Bolivia, which has a more sparsely distributed population (UNDP, 2011). Capitalizing on technology as suggested in the World Report on Disability, could contribute, although many participants in Bolivia acknowledged that they have little or no access to the internet (Buell, 2009). Speech-language pathologists in Minority and Majority world contexts could take more of a role in bridging the gap between awareness-raising and effective clinical intervention by becoming more involved in networking, blogs, and other forms of community engagement.

Organizational change for adequate service delivery

Establishing a better service requires change. Wylie et al. (2013) argue for a bio-psycho-social model for SLP that incorporates the International Classification of Functioning, Disability and Health (World Health Organization, 2001). They define barriers to accessing SLP services as structural, geographical, and financial, combined with cultural and linguistic factors. Resulting themes from the Bolivian data identified similar barriers, but there were also attitudinal barriers faced by PWCD in accessing SLP. These arose from the dominant medical model focus on treatment existent in Bolivia that remains largely within the domain of body, structure, and function, with little attention paid to the domain of participation (ICF, WHO, 2001).

Also, with the clinical medical focus in many places—they don't even let us, the mothers, into the SLP session. We don't know what's going on inside. You suppose they've been working, but we don't know what they've been doing do we? (Mother; Buell, 2009, p. 16).

Miles et al. (2012) recognizes the reluctance of people in Bangladesh to share knowledge with others. The same is clear from the Bolivian interviewees. SLPs were unforthcoming with their knowledge, often treating children behind closed doors.

It should be recognized that the landscape for PWCD in Majority world countries is unrecognizable to those more familiar with working in Minority world countries, and the starting point for change is very different. Extreme levels of poverty and social inequality, a lack of access to public finance, and ongoing political instability, lead to poor systems and weak infrastructure (Thomas, 2005). A model of organizational change (Wylie et al., 2013) implies an established organization at the centre that is influenced by external and internal forces. The evident lack of any established organization in Bolivia on which to effect change requires a closer look into the processes and power relationships between the sectors providing SLP and service users.

Ensor and Cooper (2004) rigorously explore the relationship between supply and demand in health services in Africa. They propose a model that looks at the complex interaction between service users and the service. It shifts the balance of power back towards the service users. The organizational drivers described by Wylie et al. (2013) tend to maintain the locus of power for change within the identified organization. For a country like Bolivia, at the mercy of a current global market-driven economy, a supply and demand model might be more relevant. Ensor and Cooper (2004) suggest that large gaps in service users’ knowledge combined with difficulties accessing information can reduce and dissipate demand which then fails to impact the service effectively. They focus on addressing the barriers to demand (thereby increasing the voice of potential service users) while also clarifying the barriers inherent within the existing supply of a service. Participants from Bolivia identified several demand barriers that included lack of access to the right kind of therapy, not knowing what was available in the first place, prohibitive costs of sessions, and the financial impact of time and travel getting to therapy. Weak multidisciplinary working was strongly recognized as a barrier on the supply side, along with a very low number of SLPs and the lack of adequate training for those carrying out therapy.

... there's no multidisciplinary or interdisciplinary work; it's not done. Sadly, SLPs are very scarce. They ... are the ones who have the knowledge and they don't really support other specialist areas at all: early intervention, psychologists … here the work is really individualized, and it seems to me that it should be more integrated (NGO/Co-operative worker; Buell, 2009, p. 15).

Addressing any one demand or supply barrier in isolation will not engender sustainable change within a service or improve access for service users. As Ensor and Cooper (2004) point out, change requires energies to be directed across sectors. Without improved channels for knowledge and information, better functioning roads and accessible and affordable transport, demand will not be clearly represented, and supply will not develop to meet it.

Conceptualizing service delivery

Wylie et al. (2013, p. 9) warn against “importing ... inadequate models” of service delivery from Minority world countries to Majority world countries. It is easy to fall back upon the familiarity of a default model, expecting the centres of knowledge and academic development in the global north to be replicated in the global south (Goodley, 2010, p. 170). The Bolivian data demonstrate the difficulties inherent in delivering intervention that is imported from a different culture (particularly in terms of an incomplete or unstable knowledge base), and this is reinforced by Hartley, Murira, Mwangoma, Carter, and Newton (2009, Hartley, Murira, Mwangoma, Carter, and Newton p. 490):

It is also particularly problematic when the issues to be addressed are not prominent in the consciousness of the target community as is often the case in relation to disability, particularly communication disability.

The challenge of finding a way forward in Bolivia for a better provision of SLP involves a detailed analysis of the specific cultural, political, and societal processes that play out in the lived realities of people whose daily experience would be improved by therapy. The merging of past influences, indigenous traditions, and trends towards modernism, neoliberalism, and a market economy frame the way in which disability (and therefore communication disability) is understood within a particular culture (Yeo & Moore, 2003).

The large diaspora of Latin American immigrants to the US filter knowledge and information back to Bolivia through the hybrid lens of understanding that comes from having a foot in both camps. Information flows to and from other cultures to positive effect, but often inadvertently strengthening previous colonial links and reinforcing the power dynamic between the global south and the north.

I was able to be with one fonoaudiologa who was a language therapist. She had studied in the USA, which is very different to the [one here] and I was with her for a while, but it was really expensive and I couldn't continue … (Mother; Buell, 2009, p. 18).

Cultural responses to disability (and communication disability) are nuanced by current global trends and by the inheritance of religions and beliefs from pre- and post-colonial times (Buell, 2009). Importing inadequate models becomes less relevant once the complexities of a different culture and country are considered. The first challenge is one of listening and learning between Minority and Majority world contexts and sharing knowledge to develop a better understanding of how demand and supply of SLP is affected by information flows, cultural beliefs, traditions, and political and social factors. The next challenge is to shape that supply in response to the demand.

Concluding comments

Bunning (2004, p. 5) describes how SLP intervention is not an isolated treatment behind closed doors, but is rather about “constructing optimal conditions for individuals to develop and use their available communication skills so that they are able to access and participate in social opportunities of personal value”. It is hoped that speech-language pathology services in Bolivia can, over time, develop a system that is based on its own needs and requirements. The World Report on Disability can be welcomed as a framework to develop vision and policy and as a tool for everyday practice. It can also be used as an armament in the ongoing international struggle to attain justice and equality for PWCD in society. While population-based approaches, awareness raising, and focus on service delivery all have their place in the supply of SLP, it is important to attend to the detail of who is demanding therapy, how the demand is expressed, and what goes on behind closed doors in both Minority and Majority world countries.

Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.