The World Report on Disability and communication disability: Some considerations from an Indian context

Abstract

The aim of this paper is to reflect and comment on the lead article by with reference to people with communication disability in India and illustrated by the work of one Indian non-governmental organization. Key themes and questions from Wylie et al. are identified and discussed. Suggestions for how the recommendations of the World Report on Disability might be implemented in an Indian context are made, notwithstanding the magnitude and scale of the demand for services in the context of the vast population. Nine recommendations at the meso- and micro-level are included. These emphasize three major themes: methodologies to ensure access for all those who need speech-language pathology services; enhancement of speech-language pathology training capacities to deliver holistic professional services in urban and rural settings; promotion of the involvement of advocacy groups in policy-making and, hence, facilitating people with communication needs to be more assertive about rights and entitlement.

Keywords::

• World Report on Disability
• India
• non-governmental organization
• people with communication disability
• under-served
• equity

Introduction

India, with some 1.2 billion people (Registrar General of India, 2012), is the second most populous country in the world. India has been described as a country in transition from traditional to industrial (Srinivasan & Karlan, 1997); and this transition would still seem to be in progress. On the one hand, high tech industries develop, inward investment abounds, clay teacups are replaced by plastic, and markets are replaced by shopping malls. On the other, in major cities, millions of people live in slums, rural poverty persists, universal primary education has not yet been achieved (Mukherjee, 2012), and literacy levels vary from 93.9% in Kerala to 63.8% in Bihar (Registrar General of India, 2012).

Limited statutory services have led to the development of a large number of non-governmental organizations (NGOs) providing services, including those for people with disabilities (Sen, Goldbart, & Kaul, 2008). The scale of the population, and size and diversity of the country pose many challenges both for service providers and for researchers attempting to evaluate services. Consequently, in this paper we will respond to the lead article by Wylie, McAllister, Davidson, and Marshall (2013) partly in relation to India as a whole, and partly with reference to the Indian Institute of Cerebral Palsy (IICP); a large, Kolkata-based NGO which, with its affiliates, provides a wide range of services to children and adults with cerebral palsy and related conditions across the east of India.

At the start of Wylie et al.'s (2013) thought-provoking paper, we encountered a tension. Is the focus of the paper on people with communication disabilities or on challenges to the speech-language pathology (SLP) profession? For us (a psychologist and a special educator) as authors, a focus on the latter would seem to exclude us from the debate. This would be a problem for India. With only approximately 1500 speech-language pathologists/audiologists registered with the Indian Speech and Hearing Association (ISHA) and a population of over a billion, there is no feasible model of SLP-dependent service delivery. We will assume that our (non-SLP) input is legitimate and focus on people with communication disabilities.

Prevalence of communication, and other, disabilities in India

Wylie et al. (2013) support the assertion within the World Report on Disability (World Health Organization and The World Bank, 2011) that effective service planning is predicated on accurate prevalence data. Despite the enormous cost, India is not unusual in the Majority world in holding a regular (10-yearly) national census; the most recent being in 2001 and 2011. Using the World Report on Disability figures of 2.2–3.8% (World Health Organization and The World Bank, 2011), India should have between 26,400,000–45,600,000 people with significant disabilities; between 1–2-times the population of Australia. Figures generated by the 2001 census, however, suggested only 2.1%, almost half of whom reportedly had disability “in seeing” (Census of India, 2001). Only 1,640,868 or 0.2% were identified as having a disability “in speech”. Wylie et al. (2013), using Hartley and Wirz’ (2002) analysis, suggest that this is a significant under-estimate, although the inclusion of the “speech” category does at least suggest that communication disability is seen as important.

The body responsible for designing and delivering the census of India concurs (Tamhane, 2002), and considerable effort has gone into trying to design a more appropriate question and categorization. The precise wording and coding of the disability question has been a matter of considerable debate since its inclusion was resumed for 1971 and 1981, dropped for 1991 and included again in 2001 (Tamhane, 2002). The 2001 census question offered a choice of five disability categories; in seeing, hearing, speech, movement, and mental, and was at the end of the census questionnaire. Tamhane suggests that the lower than expected figures may result from respondents’ unwillingness to report disability due to stigma and census enumerators’ reluctance to ask the question, despite training which included people with disability and a major public education advertising program.

In 2011, the disability question was moved from 15th to fifth in the questionnaire, with the aim of increasing the response rate. There was also innovative use of awareness raising resources such as YouTube to promote identification of people with disabilities in the census. For the first time, the category of “multiple disability” was included. This is at least a partial answer to the recognition that many people do not experience communication disability in isolation, but more usually as part of a complex impairment, such as cerebral palsy or Parkinson's disease. There were eight categories; seeing, hearing, speech, movement, mental retardation, mental illness, multiple, and other. Respondents identifying multiple disability could then select up to three of the specific disability categories. Whilst the data may not be sufficiently differentiated to respond accurately to the Wylie et al. (2013) question “Of the estimated one billion people with disabilities how many have a communication disability?”, the 2011 census should yield rather more precise information for service and workforce planning.

Are people with communication disability in India “under-served”?

Wylie et al. (2013) ask “Where are the gaps in SLP service provision?” A simple answer would probably be “almost everywhere”. India has both medically under-served regions; and medically under-served populations (Rao, Rao, Kumar, Chatterjee, & Sundararaman, 2011).

The Rehabilitation Council of India is the regulatory body for the development and education of professionals delivering services for people with disability. They also oversee the syllabi for professional qualifying courses and maintain a register of qualified professionals. According to the register of the Indian Speech and Hearing Association (ISHA, http://ishaindia.org.in/directory_2010.pdf), there were, in 2010, ˜ 1500 registered speech-language pathologists/audiologists for a population of 1.2 billion. This would give approximately one speech-language pathologist/audiologist for every 800,000 people. Geographical distribution is very uneven, with 21 SLPs listed for the state of Bihar (population 82,998,509) and 92 for Kerala (population 31,841,374). Thus, although all regions are under-served, some experience a completely inadequate workforce to meet the needs of the population.

Access to healthcare in general is inequitable. Balarajan, Selvaraj, and Subramanian (2011) report that, despite undoubted improvements in healthcare provision, there are major inequities of access in relation to socioeconomic status and gender. They find unequal expenditure on healthcare in rural compared to urban areas and an imbalance in favour of curative rather than preventative services. They argue, in line with Wylie et al.'s (2013) proposals, for increased government commitment to public health and primary care, including raising awareness of rights to healthcare in rural populations. This strategy has been proposed by the Ministry of Health and Family Welfare (2009), but Balarajan et al.'s data suggest that there is a long way to go before provision becomes equitable. Furthermore, communication impairment is not identified specifically, and it seems unlikely that SLP services have been considered within this strategy.

Rao et al. (2011) explore the disparities in health provision further, demonstrating that the imbalances are exacerbated by the far greater availability of education and training in health professions in those areas that are already better served. Universities and colleges offering qualifying programs in SLP send students on placement where they can be supervised by a qualified SLP. So the dearth of SLPs in rural area and education contexts means that very few students will have experience of working in rural areas or schools, indeed, anywhere outside hospital and clinic settings, reducing the likelihood that they will seek employment outside established healthcare provision. The security of government posts and the attraction of multi-speciality hospitals in urban areas offering high salaries ensure that even fewer SLPs are available to work in NGOs.

Given that SLP services are scarce and unequally available, NGOs offering disability services to people with communication impairments need to find alternative ways of addressing Wylie et al.'s (2013) question: “How do we ensure that population level needs for people's communication and swallowing receive adequate public attention?” At a general level, by offering services, albeit frequently delivered by professionals other than SLPs, NGOs can provide models of good practice which can then be used by potential consumers of services, advocacy groups, professional bodies, and others to lobby national and State governments for similar services to be rolled out to the wider community. This could be by statutory services taking on and expanding these model services or by NGOs being allocated funding to deliver the services to all those who require them (Sen et al., 2008).

Despite Wylie et al.'s (2013) reservations (see also Robertson, Emerson, Hatton, & Yasamy, 2012), in a context where SLP and other rehabilitation services are scarce, community-based rehabilitation offers a model for increasing access for those most at risk of exclusion (e.g., Crishna, 1999). One such program was developed by the current authors and colleagues, in partnership with three community development NGOs in Kolkata (Hamblin & Musa, 2006; Sen & Goldbart, 2005). It involved, initially, a 3-year action research project implemented in five urban slums, offering individualized home-based intervention for parents and their child with disabilities. The disability NGO trained and mentored community development practitioners who were already working in the slum areas to deliver rehabilitation guidance in addition to their usual role in mother and child welfare. The model has been successful and is now operating in 42 sites across Kolkata in collaboration with five community development NGOs (Indian Institute of Cerebral Palsy, 2011).

One further approach to overcoming barriers to accessing services involves harnessing indigenous technological solutions. Some of the children and adults who receive services from the NGO at the centre of this paper require augmentative or alternative means of communication (AAC). Voice output communication aids (VOCAs or speech generating devices; SGDs) available in the Minority world are expensive and may not be culturally appropriate for the Indian context. NGO staff members working in collaboration with an Indian IT company have developed a low cost VOCA suited to the South East Asian market and a range of software for symbol-based communication (IICP, 2011).

Classification of disability

In line with current thinking, the World Report on Disability and Wylie et al. (2013) argue in favour of a shift away from classification of disability by disease-specific categories and in favour of the biopsychosocial model reflected in the WHO's International Classification of Functioning, Disability and Health (ICF, World Health Organization, 2001). The ICF is an objective way of describing a person's current health status, the impact on activities of daily living and on participation in society in relation to the environmental context, and characteristics of the individual. There are, however, some suggestions that culture and/or cross-national differences in services and resources, for example the availability of AAC and other forms of assistive technology, may affect ICF ratings (Ibragimova, Lillvist, Pless, & Granlund, 2007).

In the light of dissatisfaction with the disability data from the 2001 census, Indian delegates took part in the UN Economic and Social Commission for Asia and the Pacific 4^th Workshop for Improving Disability Statistics and Measurement (Bangkok, 20–22 June 2006, http://www.unescap.org/stat/meet/widsm4/summary_situation_analysis.pdf). The Indian Survey of Disabled Persons (National Sample Survey Organisation, 2003) involved an attempt to reflect both severity and the ICF's Performance indicator; what the individual can do in his or her usual environment. This resulted in 68 disability categories. A pilot suggested reluctance among the general public to respond to such detailed questions and a view that this would only be appropriate as a targeted follow-up to the general census.

Change theory: Challenges and opportunities

A final question framed by Wylie et al. (2013) and one which fits well with the concept of SLPs as change agents, is “How can the SLP profession be responsive to the needs of under-served people with communication disorders, in ways which will influence change to improve policies, services, and practices, and promote equity?” It is difficult to answer this question in a context where there is such limited SLP provision. It may be that this objective can only be realized by SLPs working collaboratively with other professional groups and with people with communication disabilities and their families.

In relation to increasing research on disability in the Majority world, one useful model might be drawn from a recent paper describing a meeting held in New Delhi by the International Association for the Scientific Study of Intellectual Disability (IASSID). This involved representatives from NGOs, governmental groups, academics, researchers, and policy-makers working together to draw up a road map for intellectual disability research in India. Whilst it is unclear whether people with intellectual disability or their family members were involved, the topics identified provide a valuable research agenda (Cohen & Brown, 2012). The Indian Speech and Hearing Association might usefully consider hosting such a meeting to develop a map for research on communication disability in India, and including people with communication impairments as full partners in the enterprise.

As Wylie et al. (2013) suggest, the World Report on Disability is likely to become a valuable resource for stakeholders lobbying for enhanced services for people with communication disabilities. The particular challenge for people with communication disabilities in making their voices heard is well made. The World Bank (2007) report People with Disabilities in India: From Commitments to Outcomes states children and adults with disability face severe social stigma and the attendant risk of social exclusion. Overcoming these challenges will require awareness-raising programmes across all sectors of society and support for self-advocacy groups such as Ankur, based at IICP.

Concluding recommendations

Drawing on Wylie et al.'s (2013) lead article, we conclude by suggesting how the World Report on Disability's recommendations might be operationalized in an Indian context, at the meso- and micro-levels. It is difficult to comment on some of the recommendations as they relate to SLP services, which are not widely available. So, meso level will refer to actions to be taken at national and/or governmental level. Micro level will refer to actions that are being taken or could be taken by IICP, an NGO delivering services and campaigning for people with disabilities. We recognize, however, that, despite legislation and good intentions, progress at national and local level is often slow. We would, therefore, make one macro-level recommendation: the implementation of mechanisms for monitoring and accountability by and to the United Nations to ensure minimum standards of adherence for countries that have ratified the United Nations Convention on the Rights of Persons with Disabilities (http://www.un.org/disabilities/default.asp?id = 150).

Enable access to all mainstream systems and services

Meso level. The government will use 2011 census data to explore the availability of SLP services.

Micro level. IICP will develop more public awareness materials focusing on communication, so that people with communication disabilities know about available services. The NGO's education provision for children from nearby slum areas brings young typically-developing children into contact with children with disabilities, raising awareness in a mutually beneficial way (IICP, 2011).

Invest in specific programs and services for people with (communication) disabilities

Meso level. Using 2011 census data and support from the Indian Speech and Hearing Association, and Rehabilitation Council of India, lobby national and state governments for greater emphasis on SLP and related services.

Micro level. Roll out the CBR model of disability services described above across all slum communities.

Adopt a national disability strategy and plan of action

Meso level. India has a National Policy for Persons with Disabilities (Ministry of Social Justice and Empowerment, 2006), approved 10 February 2006. Using 2011 census data, the Office of the Chief Commissioner for Persons with Disabilities and national campaigning organizations should lobby for dissemination, implementation, evaluation, and enhancement of strategies identified within the policy (World Bank, 2007). Work on a new disability law to replace the 1995 Persons with Disability Act is underway. The great disparity between states and across the rural–urban divide, however, means that national strategies and laws require decentralized plans for action and strict monitoring procedures if they are to be effective.

Involve people with disabilities

Micro level. IICP currently involves people with disability at all levels, including the staff. People with disabilities are involved in developing and delivering services and carrying out and disseminating research. There are, however, always improvements that could be made in this area and it must be kept under review.

NGOs such as IICP are well-placed to support self-advocacy groups to lobby for enhanced services and for a greater role in determining the nature of those services. One such group, Ankur, based at IICP, is developing a national profile in training and advocacy work.

Improve human resource capacity

Meso level. In addition to expanding education and training of SLPs, there is a need to enhance content on communication impairment in the education of teachers (Pachigar, Stansfield, & Goldbart, 2011).

To emphasize the inclusion of the entire continuum of communication disability in SLP initial education and service delivery, the recently formed India Chapter of the International Society for Augmentative and Alternative Communication is promoting AAC practice and resources through conferences and training opportunities.

Micro level. IICP currently runs a qualifying program in special education with a strong component on communication. Further training could be offered to community development workers on the CBR project.

Provide adequate funding and improve affordability

Meso level. As proposed by Wylie et al. (2013) “Government and policy agents engage in development of funding models to ensure equitable access for underserved people with communication disability”.

Increase public awareness and understanding

Meso level. Government and national bodies will develop their innovative use of new technologies for public engagement, but also use more traditional methods to raise disability awareness in rural and other excluded communities.

Micro level. The NGO will maintain its commitment to public awareness meetings, engagement with the media, and use of film and non-text-based materials to engage people with limited literacy skills.

Improve disability data collection

Meso level.This is already part of Census 2011 and further refinements are possible.

Strengthen and support research on disability

Meso level. For NGOs to work with national and international organizations to develop relevant research agendas, for example, through the kind of exercise undertaken in India by the International Association for the Scientific Study of Intellectual Disabilities (IASSID, Cohen & Brown, 2012).

Micro level. For IICP to continue to undertake culturally relevant research and to contribute to evaluation of service developments.

Conclusion

We welcome the opportunity to reflect and comment on the World Report on Disability and the carefully thought-out lead paper (Wylie et al., 2013). We have found their recommendations highly relevant to the Indian context, reflecting the three broad themes of access to services, education of staff in appropriate service delivery, and the important role of self- advocacy. There is no room for complacency in considering the situation of people with communication disorders in either Minority or Majority world countries, and the scale of India poses particular challenges. The collaboration between high quality NGOs and national and state governments, however, has been and must continue to be a significant force in enhancing the life chances of all people with communication disability.

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