Research on Standard Disability Survey Tools and Measurement

Ethiopian National Disability Action Network (ENDAN) Comitato Collaborazione Medica (CCM) Research on Standard Disability Survey Tools and Measurement November 2010 Addis Ababa Ethiopia

Table of Contents 1. Introduction 1 2. Context Analysis and Justification 3 2.1. Background... 3 2.2. Justification... 4 3. Research Objectives, Scope and Methodology 8 3.1. Objectives... 8 3.2. Scope of Work... 8 3.3. Methodology... 8 4. Overview of Disability Statistics 10 4.1. Need and Importance of Disability Data... 10 4.2. Conceptions, Definitions and Classifications of Disability...11 4.3. Initiatives towards Standardized Measurement and Collection of Disability Information... 15 4.4. International Classification of Functioning, Disability and Health (ICF)... 17 5. Findings and Discussion 18 5.1. General Information on Disability Data Collection Instruments... 18 5.2. Definitions and Classifications of Disabilities... 20 5.3. Participation of PwDs... 30 5.4. Overall Assessment of Instruments, Gaps and Challenges... 31 6. Conclusions and Implications 32 6.1. Conclusions... 32 6.2. Implications for Guidelines Development... 33

1. Introduction It is well documented that persons with disabilities (PwDs) face barriers in their participation as equal members of society in all parts of the world. Especially in the developing world such as Ethiopia, the magnitude of barriers persons with disabilities face have rendered them largely excluded from the mainstream society and experience severe difficulties in accessing community resources. This segment of the society continues to face numerous barriers despite decades have elapsed since the international community has recognized the problem and adopted various instruments towards advancing their status. At the national level, there are progressive measures adopted by development actors, including the government, with a view to establishing a more inclusive society in the country. Redressing the challenges faced by PwDs however leaves much to be desired. The pressing need for strengthened and more effective disability interventions remains imperative. The issue of disability has gained increased prominence in development discourse In Ethiopia. Globally, disability is interlinked with poverty and as such is considered as integral part of the global effort to achieve the Millennium Development Goals (MDGs) to which the Ethiopian Government has committed itself. In June 2010, the Ethiopian Government has adopted various disability-specific measures, including ratification/accession to the landmark 2006 UN Convention on the Rights and Dignity of Persons with Disabilities (CRDP). What is more, non-governmental organizations (NGOs) operating in the country are increasingly mainstreaming disability issues in their works. Compared to the number of people with disabilities, nevertheless, the degree of prominence the issue of disability acquired in the country s development effort is incommensurate. The number of people affected by a certain issue or problem has direct bearing on the level of priority the issue or problem gets in development endeavours. So speaking of persons with disabilities in Ethiopia, are we referring to significant portion of the society or to numerically insignificant minority? What is the exact number of persons with disabilities in Ethiopia? These are very basic questions which appear simple to give an answer to. To the contrary, in Ethiopia and in many other developing countries, valid and reliable information on the incidence and prevalence of disability is hard to come by. Commenting on the global situation in regard to disability information or data, one writer comments that: [a]t present, information and data on disability are scarce, unreliable and scattered among organisations and institutions around the world, making it extremely difficult to conduct research necessary to fully understand the status of people with disabilities, develop costeffective disability policies and strategies, or evaluate the cost-effectiveness of competing approaches 1 Few available studies that touched upon the issue describe existing data in Ethiopia as suffering from poor quality, lack of international comparability and limited applicability. 2 Main reasons attributed to this unfavourable situation concern gaps related to frameworks for understanding disability; the tools and methods employed in collecting and measurement of disability information; and, technical competency of data producers. One major challenge in terms of producing internationally comparable disability information relates to the relative and dynamic nature of the concept disability. Disability is a relative concept because it is differently understood according to cultures, attitudes and prevailing social norms. However, at global level the need to have a framework for understanding and analyzing disability was felt decades ago and 1 (Metts, 2000, p 55) in Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005) p.20 2 For example Tirussew Teferra, Disability in Ethiopia: Issues, Insights and Implications (2005, Addis Ababa Printing Press), p. 2 & CARDOS /Action Aid Ethiopia, Research Report on the General Conditions of People with Disabilities in Ethiopia (2007), pp. 21-23 1

efforts made towards this have produced the bio-psychosocial model as widely acceptable model for understanding disability. The bio-psychosocial model follows multidimensional approach in understanding disability. According to the bio-psychosocial model, disability is the result of interactions between the person s health condition (disease, disorders and injuries), environmental factors (social attitudes, architectural characteristics, social structures, etc) and personal factors (gender, age, coping styles, social background, education, etc). 3 Development of the concept disability by the bio-psychosocial model reflects the incorporation of an ever increasing set of complex concepts and relationships to explain the disabling process 4. Considering, for example, a person losing a limb due to car accident, the accident and the resulting impairment are simply what initiate the disability process. 5 The victim s disability is described by interaction of several interrelated factors including the effect the trauma has on the individual, the characteristics of the individual who experiences the health trauma, the characteristics of those around them, the social and structural context they inhabit, the cultural orientation of the community and the policies of the governing bodies 6. As different models for understanding disability offer varying conception of disability, definitions of disability that can be drawn from each model vary accordingly. Different definitions imply different tools, measurements and methods for data collection. Disability information or data collected following diverse disability models or definitions produce different disability prevalence figures. This is a practical problem which rendered virtually all existing disability information or data produced in Ethiopia as well as many other developing countries out of date and internationally incomparable. Understanding the problem, the World Health Organization (WHO) has offered a standard language and framework for understanding disability based on the bio-psychosocial model, known as the International Classification of Functioning, Disability and Health (ICF). Based on ICF, a group associated with the UN Statistical Division known as the Washington Group has produced important tools and measurements to guide data producers operationalize the ICF, and thereby generate internationally comparable data. Disability data producers the world over are strongly recommended to adopt this ICF framework and standards. This research assesses available systems of disability data collection and the comparability of existing disability information or data in Addis Ababa, Ethiopia. This research is conducted as part of the effort to develop guidelines for generating reliable and internationally comparable disability information or data in Ethiopia. Findings of the research and implications for producing guidelines are presented in this document. The report begins by providing background information, justifications for the work and description on the scope and objectives of the research as well as the methodologies employed in data collection and analysis. Then it presents detailed information on contemporary conceptualization of disability and on internationally accepted standard tools and measurements on disability data collection. Thirdly, it reviews conceptualization of disability among disability data producers in Ethiopia, examines disability data collection tools and measurements the various information producers employ. Finally, it provides overall assessment and conclusions, and forwards suggestions to be taken into account in developing the guidelines. 3 World Health Organization (2002) Towards a Common Language for Functioning, Disability and Health The International Classification of Functioning, Disability and Health (ICF). WHO/EIP/GPE/CAS/01.3 Geneva, World Health Organization, p. 10 4 ( randt (Brandt and Pope, 1 7 1997 and World Health Organization, 2001) in B Altman & S Barnartt arnartt eds. International views on Disability measures: Moving towards comparative measurement. Research in Social Science and Disability, 4: pp. 263-284. (Elsevier Ltd. Oxford, 2006). 5 Id. 6 Id. 2

2. Context Analysis and Justification 2.1. Background In 2000 it was claimed that published estimates of national, regional and global disabled populations are little more than speculation and educated guesswork 7. However profound such claim sounds, the huge discrepancy that exists between disability prevalence figures different international agencies came up with elucidate the point. For many years the WHO has applied the 10 percent estimate. 8 The author of the WHO estimate more than fifteen years back is reported to have suggested that the proportion of persons with disabilities is more likely to be around 4% in low-income countries and 7% in high-income countries. 9 To date many agencies including the World Bank 10 and NGOs in Ethiopia apply WHO s 10% estimate due to the lack of valid and reliable data. Notwithstanding, UNDP has come up with yet another different estimate. According to UNDP s estimate, the global average prevalence rate is 5%, 11 and the proportion of persons with disabilities in High Human Development (HHD), Medium Human Development (MHD) and Low Human Development (LHD) countries is respectively 9.9%, 3.7% and 1.0%. 12 Here it should be pointed out that UNDP is criticized by others for largely excluding people with learning disabilities, mental health problems and/or invisible disabilities. 13 What is more, statistical or other disability information or data generated in different countries show a much wider range of discrepancy. Reported national prevalence rate in some countries is as high as 20%, whereas in others it is as low as 1%. Estimated disability rates tend to be higher in developed (high-income) countries, possibly due to variations in definition of disability and in the way information is collected, demographic differences, and greater capacity to diagnose some conditions. 14 Reasonably, it is hard to believe that such level of discrepancy reflects the reality on the ground. The absence of a common language of disability, including a common understanding of the multidimensional concept of disability, is the principal cause of the lack of agreement on disability data around the globe. 15 The discrepancy is noted as more likely a necessary outcome of the use of varied conceptions and hence definitions of disability. Secondly, measurement stands out a key problem that most existing instruments are poorly standardised, consequently producing non-comparable estimates. It is thus not surprising that there is little internationally comparable statistical data on the incidence, trends and distribution of impairment and disability, and much national-level data, particularly in the developing world, is unreliable and out-of-date. 16 It goes without saying that there is a need for establishing scientific basis and valid conceptual framework in collecting disability data and in measuring disability, particularly in developing countries. Cognizant of 7 Mett L R 2000. P. 6 in Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005) 8 The 10 % estimate was also applied in connection with the launch of the UN Decade for Disabled Persons more than twenty years ago and the release of the World Porgram of Action Concerning Disabled Persons (UN 1982) 9 (Coleridge, 1 3) 1993) in Mett L R 2000. P. 6 in Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005). P. 11 10 Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005).p.11 11 Coleridge, 1 3) 1993) in Mett L R 2000. P. 6 in Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005). P. 11 12 Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005).p.11 13 Moore 2003 in Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005).p.11 14 Elwan (1999) in Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005).p.11-12 15 WHO/ESCAP, Training Manual on Disability Statistics (2008), p. 9 16 (Erb & Harris-White 2001, Yeo 2001) in Moore 2003 in Arne H. Eide, Mitch E. Loeb, Data and statistics on disability in developing countries. (DFID Disability Knowledge and Research Program, July 2005).p.10 3

this, the international community has decided to take crucial initiatives to develop valid and internationally comparable disability statistics. The most notable steps are those initiated by the WHO, the United Nations Statistical Division, and the Washington City Group on Disability Statistics. WHO is now leading an international effort aimed at providing a unified and standard language and framework for understanding disability and for measurement and collection of disability information. This standard which the WHO re-launched in 2001 is now called the International Classification of Functioning, Disability and Health (ICF). If fully and meaningfully implemented by all disability data producers, ICF is thought to help produce consistent and internationally comparable disability data. Moreover, an extension of the United Nations Statistical Division, the Washington Group, has provided important tools for collecting internationally comparable disability data based on the ICF framework. Frameworks and standards established by the ICF and the Washington Group are meant to guide all disability data producers, including non-state development actors. Thus far disability information generated by non-state actors in the Ethiopia is not internationally comparable. Tools, mechanisms and methods of disability data collection non-state development actors employ lack uniformity and harmony. Neither the recommended ICF framework nor the Washington Group s standards is guiding stakeholders efforts in measurement and collection of disability data in the country. 2.2. Justification Undoubtedly, more concerted and effective interventions are required to advance the status of persons with disabilities in Ethiopia and improve their lives. Without appropriate information on the causes, incidence and prevalence of disability, and on the conditions of persons with disabilities, actors are hardly able to design effective strategies and galvanize stakeholders concerted involvement in disability issues. As noted above, the number of population affected by an issue has direct bearing on the level of priority the issue gets in development discourse. The more the number of persons with disabilities, the more disability issue will form part of development agenda. So is the more attention the issue gets on the part of stakeholders. Availability of appropriate disability data should thus be considered part of the effort to address the conditions of persons with disabilities. Development actors and other stakeholders need disability information or data for various reasons. Those who need the information may include: 17 Researchers The general public Policy makers Associations and NGO s Trade unions Government agencies International organizations Health service organizations and providers Industries Device and equipment manufacturers Employers Disability consumer groups Insurance agencies Education planners Media agencies 17 Id. P. 97 4

And, reasons why they need the information are among others for: 18 Planning Project and planning evaluation Marketing Policy development Advocacy and political action Prevention Tracking and enhancing participation Improving services Creating or improving standards It is thus no wonder that various international and regional instruments on disability increasingly stress the importance of appropriate disability information or valid disability database, and call for development actors to act towards this. Examples of such instruments at the international level include: World Programme of Action Concerning Disabled Persons (1982), and the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993). At regional level, the Continental Plan of Action for the African Decade of Persons with Disabilities (2002) reinforces the international call, inter alia, by emphasizing in Article 42(g) the need to establish a database or databases, compiling disability-related information of different kinds. After decades have passed since such call is pronounced by some of the stated instruments, availability of sound disability statistics or valid disability database, particularly in developing countries is considered virtually non-existent. Compared to other areas of statistics, such as labour force and education, disability statistics is not well developed and utilized. It is very recently that development actors began to recognize the urgency and importance of such statistics for better development programming. Ethiopia is no exception. Existing information on the incidence and prevalence of disability and on the conditions of persons with disabilities is characterized as fragmentary, incomplete and sometimes misleading. 19 Main sources of statistical information on the prevalence of disability in Ethiopia are census and survey reports, of which the following three are the major ones: the 1994 and the 2007 Population and Housing Census Reports of the Central Statistical Agency (CSA) and the Baseline Survey on Disability in Ethiopia conducted in 1995 by Institute of Educational Research, Addis Ababa University. National disability prevalence figures these three statistical sources provide respectively are 1.85%, 1.09% and 2.95%. While all the three sources provide inconsistent figures, the fact that inconsistency is observed even on data produced within similar timeframe, namely the 1994 Census Report and the 1995 Survey Report, is worth noting. Moreover, national prevalence figures all the three sources revealed are much less than the default World Health Organization s 10 percent of any given country s population estimate. For these reasons, it is unlikely that any of the three sources can be treated with certainty. In fact, NGOs in general use WHO s estimate instead of these three sources. Moreover, several government documents cite different disability prevalence figures than that is revealed by census and survey figures. For example, the National Plan of Action for Children provides that the total number of persons with disabilities in Ethiopia is about 4.9 million in 2003. Similarly, the Ministry of Health (MoH) and the Ministry of Education (MoE) cite different prevalence figures in respect to certain disability types. Wide difference in national prevalence estimates produced by the three major statistical sources and the WHO as well as the inconsistency amongst the three domestic sources is mainly explained by differences in conceptualizing disability as well as in measurements and classifications used for collecting disability data. Accordingly, disability information generated by the stated census and survey reports are incomparable not only between them, but also internationally. 18 Id. P. 98 19 Tirusew Tefera, Supra note 2, page 2 5

More than ever before, producing internationally comparable disability statistics or database has now become very important. Such information or data is regarded as necessary not only to demonstrate the disadvantageous conditions of PwDs in regard to welfare, but also to produce data which is useful for monitoring achievements on international development commitments. 20 The United Nations Millennium Development Goals (MDG) is a case in point. It is believed that in any country PwDs represent significant section of any given society and also they disproportionately make up the poorest of the poor. Accordingly, disability is a relevant factor in the effort to meet MDG targets such as eradicating of poverty, reaching equality between genders, reducing child mortality, improving maternal health, combating HIV/AIDS. Without internationally comparable disability information, it is difficult, if not impossible, to see level of countries progress towards achieving MDG targets in regard to PwDs. Same is true in respect of monitoring implementation of the Convention on the Rights and Dignity of Persons with Disabilities (CRDP). The CRDPin Article 31 specifically requires the production of internationally comparable disability information to monitor progress made in implementing the CRDP. The relevant Article reads: Article 31- Statistics and Data Collection 1) States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall: a) Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities; b) Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics. 2) The information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights. 3) States Parties shall assume responsibility for the dissemination of these statistics and ensure their accessibility to persons with disabilities and others. The call for generating internationally comparable disability information in Ethiopia is thus long overdue. Now, it is imperative that appropriate development actors in the country generate consistent and internationally comparable information on disability. The progresses made on disability statistics at the international level is of great help to disability information or data producers in the country generate such information or data. In the effort to bring collection and measurement of disability information in the country in line with international frameworks and standards, assessing existing practice of measurements and mechanisms development actors used in collecting disability data is essential. In other words, in order to harmonize development actors tools, measurements and methods with the ICF frameworks and the Washington Group standards, it is important first to identifying gaps, inconsistencies and loopholes on existing practices in the country. Undertaking such assessment, though an essential and first, is by no means sufficient task. Need-based and country specific standard guideline needs to be produced based on assessment s findings. The purpose of the Standard Guidelines to be produced will serve all organizations involved in producing disability information or data in the country as a framework for measuring and collection of disability information. Furthermore, in order to facilitate swift incorporation the ICF framework and the Washington Groups standards by development actors, it is important to provide sensitization training, among others, for Ethiopian Disability Action Network (ENDAN) members. 20 Arne H. Eide, Mitch E. Loeb, Supra note 1, p. 21 6

This research work is thus the first of three consecutive activities set to be implemented, namely assessment, Guideline Production and Training. The research assesses whether or not tools, measurements and methods development actors employ in collecting disability data in Ethiopia produce internationally comparable disability information. As noted above, the findings of the research will form the basis for the Guideline that would be prepared subsequently. 7

3. Research Objectives, Scope and Methodology 3.1. Objectives The general objective of this research is to support ENDAN member organizations to adopt a uniform approach in collecting data on persons with disabilities, and thereby contribute for the creation of a centralized database on persons with disabilities in the future. The specific objectives of this research work are: To identify formal and informal mechanisms used by relevant government offices, member organizations, persons with disabilities organizations (DPOs) and other organizations working on disability areas to identify persons with disabilities; and To provide pertinent information that would serve as an input for standard guidelines to be developed subsequently to help ENDAN members and other stakeholders generate internationally comparable disability information, including in classifications, identification of main causes of disability and in evaluating socio-economic status of persons with disabilities. 3.2. Scope of Work The research involves the following three main activities: Review of international initiatives on data collection and disability Assessment on mechanisms of data collection on disability prevalence Assessment on measurements used in disability data collection Implication for developing standard guidelines for collecting and measuring disability data in Ethiopia The research reviews contemporary literature on frameworks and standards for producing a reliable and internationally comparable disability information or data. Review of literature will focus on frameworks and standards established by the ICF and the Washington City Group. In addition, the research identifies formal and informal mechanisms employed by the state and non-state actors involved in collecting disability information in the country. Main potential sources of disability information or data in the country are: Population censuses; Sample surveys (either general social surveys or specific health and disability surveys); and Administrative collections and registries. The research reviews and assesses these three sources and latter describe the assessment s implication on the standard guidelines to be prepared subsequently. The assessment is conducted in Addis Ababa covering persons with disabilities, governmental institutions, donors, international agencies and non-governmental organizations engaged in producing disability data. 3.3. Methodology In general, methods applied in this project have been a review of relevant international initiatives and domestically produced research reports and interview with relevant stakeholders including persons with disabilities and their organizations. Both primary and secondary information has been collected from electronic and printed sources 8

and through interviews and discussions with relevant stakeholders. Accordingly, institutions from governmental and non-governmental organizations (ENDAN members and non-endan members) as well as international agencies have been contacted. Different groups of persons with disabilities have also been contacted to generate information with respect to conception of disability and types of disability by persons with disabilities themselves and its consistency with that of other actors; their knowledge of and participation in the design and implementation as well as utilization of disability related information; and their perceptions of existing gaps or problems and suggested solutions. Principal techniques of data collection included: Review of literature on disability and data collection methods and trends (international and comparative); Assessment of secondary information and forms/questionnaires used by relevant organizations in collecting information on persons with disabilities in Ethiopia; Key informant interviews with management and technical staff of relevant institutions engaged in producing disability data; and, Interviews with groups of persons with disabilities and their guardians. To guide discussions and interviews, checklists of questions were developed in advance for the different groups of stakeholders. The checklists focused on the issues outlined above. The data collected through the various means were then analysed thematically. 9

4. Overview of Disability Statistics 4.1. Need and Importance of Disability Data As noted before, international and regional instruments on disability stress the importance of having sound disability statistics and valid disability database. At the national level, the National Statistical Development Strategy (2009/10-2013/14) of the Ethiopian Central Statistical Authority (CSA) acknowledges the need for maintaining a comprehensive data on persons with disabilities in the country. There are many reasons why the above stated instruments and documents acknowledged the need and importance of disability statistics or valid disability database. Just as any quality statistical information or data, quality disability information is needed for service programming and development, capacity building, budgeting, and seeking international assistance, among many others. Specifically, appropriate disability statistics or data is important for the following three reasons: monitoring the level of functioning in a population; for provision of services and equalization of opportunity. Monitoring the level of Functioning in Population Monitoring functioning levels in a population is important for two purposes. First, it helps to understand the prevalence of disability. Second, it helps in evaluating the success of disability interventions. Prevalence of disability correlates with how high priority disability issues should receive in the country s development agenda. The more persons with disabilities, the more important disability issue will be. By the same token, the more persons who are living with particular disability types, the more important disability issues that particular disability type will be. Collecting data on prevalence of disability in general, on the prevalence of a particular type of disability, will enable development actors to measure how many persons with disabilities could benefit from, for example, special needs education program. Measuring the impact of preventive programs such education programs to prevent traffic accidents requires data on the magnitude of disability caused by traffic accident before program intervention commences. Provision of Services Another important importance of disability information or data is to design and implement programs aimed at providing services to persons with disabilities. Two types of services can be envisaged heremainstream and disability specific services. The former refers to services made available to the general public, and appropriate disability data provides the relevant information to accommodate persons with disabilities in the provision of mainstream services. The latter refers to specific services targeted at persons with disabilities in general, or targeted at persons with a specific disability types in particular (e.g., providing prosthetic devices and the associated rehabilitation services). Organizations planning to design service delivery programs would need detailed information on peoples functioning levels, the supports that people have available to them within their family and within their community, and environmental characteristics. More specifically, in order to design a program for persons with vision problems detailed information is needed on how many people are blind as opposed to how many people had some limited vision they could utilize, and how many had problems that were correctable by glasses. If an organization plan is to design an on-site program, it needs to have information, among others, on the target beneficiaries ability to travel to the center to receive services. Their ability to travel, of course, would be a function of the extent of their vision problems, the presence of other functional limitations, the accessibility of transportation systems, and the resources (monetary and non-monetary) that they could employ. And an extensive household survey or administrative database that is designed with an idea in mind of what services are going to be delivered provides the required information or data. 10

Equalization of Oppor tunities Another importance of disability information or data is to assess the impact of having a limitation on individuals and their families. The goal of inclusive development is to enable all people to have equal opportunities for participating in the economic and social lives of their communities. Appropriate disability information or data how inclusive a society is in respect to persons with disabilities. Such information is also important to monitor progresses made in ensuring equal participation of persons with disabilities in the all aspects of the society. The following lists of points identified by the WHO 21 provide more specific and detailed information why appropriate disability information or data is important. Box 1: At the individual level For the assessment of individuals: What is the person s level of functioning? For individual treatment planning: What treatments or interventions can maximize functioning? For the evaluation of treatment and other interventions: What are the outcomes of the treatment? How useful were the interventions? For communication among physicians, nurses, physiotherapists, occupational therapists and other health works, social service works and community agencies For self-evaluation by consumers: How would I rate my capacity in mobility or communication? At the institutional level For educational and training purposes For resource planning and development: What health care and other services will be needed? For quality improvement: How well do we serve our clients? What basic indicators for quality assurance are valid and reliable? For management and outcome evaluation: How useful are the services we are providing? For managed care models of health care delivery: How cost-effective are the services we provide? How can the service be improved for better outcomes at a lower cost? At the social level For eligibility criteria for state entitlements such as social security benefits, disability pensions, workers compensation and insurance: Are the criteria for eligibility for disability benefits evidence based, appropriate to social goals and justifiable? For social policy development, including legislative reviews, model legislation, regulations and guidelines, and definitions for anti-discrimination legislation: Will guaranteeing rights improve functioning at the societal level? Can we measure this improvement and adjust our policy and law accordingly? For needs assessments: What are the needs of persons with various levels of disability - impairments, activity limitations and participation restrictions? For environmental assessment for universal design, implementation of mandated accessibility, identification of environmental facilitators and barriers, and changes to social policy: How can we make the social and built environment more accessible for all persons, those with and those without disabilities? Can we assess and measure improvement? 4.2. Conceptions, Definitions and Classifications of Disability Conceptions of Disability Disability is a relative and dynamic concept. It is a relative concept because it is differently understood according to cultures, attitudes and prevailing social norms. Notwithstanding, the need to have a framework for understanding and analyzing disability at global level was felt decades ago and efforts made towards this have produced different frameworks or models of understanding. Identified models of 21 World Health Organization (2002), Supra note 3, p. 6 11

disability are: the medical model, the social model and the bio-psychosocial model. Each model is brought forward and took prominence at one stage in the global disability movement. And each has influenced the contemporary framework for understanding disability, which is the bio-psychosocial model. As conceptual and definitional issues are fundamental issues raised in connection with international comparability of disability information generated by different information or data producers, it is thus essential that the models of disability are now explained. The models are: the medical model, the social model and the bio-psychosocial model. While the medical and social models of disability are the long debated models, the bio-psychosocial model represent the contemporary understanding of disability. The medical model is a traditionally held view which regards disability as an individual person s medical condition in need of cure, rehabilitation and adaptation to society. Under this model, focus is placed on the person s limitations to do daily activities within the home, such as ability to walk or ability to dress oneself; as such enabling persons with disabilities do the stated activities is equated with making them reach their maximum potential. In contrast to the medical model, the social model of disability underscores inclusion or participation of persons with disabilities in society. It considers environmental or social factors as reasons for persons with disabilities exclusion or marginalization in society. According to this model, the barrier for persons with disabilities participation in society is the society in which they live. The society does not provide for the needs of persons with disabilities (inaccessible buildings, no brail books, no sign language interpreter, etc.) and thus disables the person by not allowing for their inclusion. The challenge is for the society to adjust or to accommodate PwDs. The model which established the framework for contemporary understanding of disability is the biopsychosocial model. This approach views disability as multi-dimensional phenomena and acknowledges the significance of addressing both the medical and social dimensions of disability. According to this model, disability is understood as a product of interaction between a person s certain conditions or functional limitations and his or her physical, social, and attitudinal barriers. According to this model, medical and rehabilitative interventions are important in addressing body-level aspects of disability, i.e. impairments and limitations in a person s capacity to perform actions; while at the same time environmental and social interventions are essential to deal with restrictions in a person s participation in educational, economic, social, cultural and political activities. 22 The bio-psychosocial model is the World Health Organization s (WHO) framework for understanding disability and has formed the basis for the International Classification of Functioning, Disability and Health (ICF). 22 WHO/ESCAP, supra note 15, p.14 12

Box 2: ICF Conceptualization of Disability Disability is the umbrella term for any or all of: an impairment of body structure or function, a limitation in activities, or a restriction in participation. The key components of disability are defined as follows: Body functions are the physiological functions of body systems (including psychological functions). Body structures are anatomical parts of the body such as organs, limbs and their components. Impairments are problems in body function and structure, such as significant deviation or loss. Activity is the execution of a task or action by an individual. Participation is involvement in a life situation. Activity limitations are difficulties an individual may have in executing activities. Participation restrictions are problems an individual may experience in involvement in life situations. Environmental factors make up the physical, social and attitudinal environment in which people live and conduct their lives. These are recorded as either facilitators or barriers (both on a 5-point scale) to indicate the effect they have on the person s functioning. Definitions of Disability While definitions of disability that can be drawn from each model of disability differ in meaning and scope, ICF views disability as the umbrella term for any or all of an impairment of body structure or function, a limitation of activities, or a restriction in participation 23. In practice, data producers across and within countries adopt different definitions of disability and often not in line with the ICF framework or the bio-psychosocial model of understanding disability. Different definitions imply different tools, measurements and methods for data collection. Disability information or data generated as such will produce different disability prevalence figures and obviously lacks international comparability. Definition of disability data producers across the globe follow is not uniform, selected definitions taken from few international instruments can show how closely or remotely a given definition reflect the contemporary understanding of disability. Three selected definitions are provided below: The UN Standard Rules on the Equalization of Opportunities provides a definition of disability by stating that disability: summarizes a great number of different functional limitations occurring in any population in any country of the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions or mental illness. Such impairments, conditions or illnesses may be permanent or transitory in nature 24 The United Nations, in providing recommendations for the conduct of national censuses defines a person with disability as: A person who is limited in the kind or amount of activities that he or she can do because of ongoing difficulties due to a long-term physical condition, mental condition or health problem (United Nations, 1998). 25 The Convention on the Rights and Dignity of Persons with Disabilities states that:...disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others 26 23 World Health Organization (2002), Supra note 3, p. 6 24 The UN Standard Rules on the Equalization of Opportunities 25 Colin Robson, EDUCATING CHILDREN WITH DISABILITIES IN DEVELOPING COUNTRIES: THE ROLE OF DATA SETS. The University of Huddersfield with Peter Evans, The OECD Secretariat. P.2 26 The UN Convention on the Rights and Dignity of Persons with Disabilities (CRDP), preamble para. (e) 13

The Convention further provides that: Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. 27 Of the three selected definitions provided above, it is clear that the definition provided by the CRDP reflect the bio-psychosocial model of understanding disability both in terms of meaning and language. Classification As noted before, development in conceptualization of disability from the medical model to the biopsychosocial model has brought about a complex set of dimensions that need to be considered in explaining disability. Based on the bio-psychosocial model, three domains of human functioning are classified by ICF: functioning at the level of body or body part, the whole person, and the whole person in a social context. Disability therefore involves dysfunctioning at one or more of these same levels: impairments, activity limitations and participation restrictions. 28 Notwithstanding its complexity classification of disability into three domains by ICF underlies much of the efforts to obtain national and international data sets in the disability field. 29 What these components of ICF refer to is illustrated in the box below: 30 Box 3: Function: Mental Functions Sensory Functions and Pain Voice and Speech Functions Functions of the Cardiovascular, Haematological, Immunological and Respiratory Systems Functions of the Digestive, Metabolic, Endocrine Systems Genitourinary and Reproductive Functions Neuromusculoskeletal and Movement- Related Functions Functions of the Skin and Related Structures Body Structure: Structure of the Nervous System The Eye, Ear and Related Structures Structures Involved in Voice and Speech Structure of the Cardiovascular, Immunological and Respiratory Systems Structures Related to the Digestive, Metabolic and Endocrine Systems Structure Related to Genitourinary and Reproductive Systems Structure Related to Movement Skin and Related Structures Activities and Participation Learning and Applying Knowledge General Tasks and Demands Communication Mobility Self Care Domestic Life Interpersonal Interactions and Relationships Major Life Areas Community, Social and Civic Life 27 Id., Art. 1 28 World Health Organization (2002), Supra note 3, P.10 29 Colin Robson, Supra note 25, P.3 30 Id.. P.16 14

Environmental Factors Products and Technology Natural Environment and Human-Made Changes to Environment Support and Relationships Attitudes Services, Systems and Policies Moreover, The formal definitions of the components are provided in the Box below. As can be understood from the Box provided above, data about impairments is different from data about activity limitations, which again is different from data about participation restriction. At this juncture, the question: Which dimension of disability does disability data producer want to collect data on Is critical. Indeed, there are legitimate and vitally important needs served by all three kinds of data. However, different purposes require different kinds of disability data: If the purpose is to collect information about the prevalence of physiological or psychological functions such as mental functions, systems, and so on, then impairment data will be needed. If the purpose is to collect information about the capacity of a population to perform daily activities such as mobility, communication, self-care, and interpersonal relations, then data about activity limitations will be needed. If the purpose is to collect information about what members of a population actually are able to do in their lives, and, in particular, what features of their physical, built, interpersonal, or social environment help or hinder them, then data about participation restrictions will be needed. It should be remembered here that disability according to the ICF refers all three dimensions taken together. Therefore, it is only when all three kinds of information are collected that one can have a complete picture of the lived experience of disability for a particular person. 31 For this reason, information on impairment alone, though certainly relevant to disability experience, provides a very limited perspective on disability. 32 Accordingly, population surveys and censuses directed at collecting data on impairments alone are considered to under-describe disability and under-estimates the prevalence rate of disabilities as a whole. 33 Relying on the impairment approach, in other words, identifies the persons with disabilities as a core minority of severely disabled individuals, ignoring a substantial group of individuals with moderate and mild disabilities. 34 4.3. Initiatives towards Standardized Measurement and Collection of Disability Information The demands for more and better quality information or data on disability are expressed on instruments adopted by the United Nations. In response to such demand, the United Nations and other organizations have undertaken various activities that contribute for the production of internationally comparable disability data. In this regard, WHO s ICF, United Nations Statistics Division and the Washington City Group are the three notable initiatives. World Health Organization s ICF The ICF conceptual framework provides standardized concepts and terminology that can be used in 31 Daniel Mont and Mitchell Loeb, Beyond DALYs: Developing Indicators to Assess the Impact of Public Health Interventions on the Lives of People with Disabilities. (The World Bank, May 2008).p.4 32 Id.. 33 Id. 34 Id. 15

disability measurement instead of the un-standardised and often pejorative terms used in many national studies on disability. The use of a common framework also contributes to greater comparability of data at the national and international levels, thereby increasing the relevance of the data to a wide set of users. United Nations Statistics Division The United Nations Statistics Division issues standards and methods approved by the Statistical Commission to assist national statistical authorities and other producers of official statistics in planning and carrying out successful population and housing censuses. It has produced several publications aimed at assisting national statistical offices and other producers of disability in improving the collection, compilation and dissemination of disability data. The Guidelines and Principles for the Development of Disability Statistics (2001) is one such publication aimed at in improving data collection, compilation and dissemination of disability data. This guideline addresses different methodological issues on disability data collection, and also on the section on disability it contains Principles and Recommendations for Population and Housing Censuses, which suggested the following disability questions for censuses: Because of a long- term physical or mental condition that has lasted or is expected to last six months or more, how much difficulty do you have? (Check all that apply) Seeing (even with glasses, if worn) Hearing (even with hearing aid, if used) Speaking (talking) Moving/mobility (walking, climbing stairs, standing) Body movements (reaching, crouching, kneeling) Gripping (using fingers to grip or handle objects) Learning (intellectual difficulties and retardation) Behaviour (psychological, emotional problems) Personal care (bathing, dressing, feeding) Others please specify. It should be noted here that the 2001 Guidelines were published before completion of the ICF and so it does not provide much detail on applying the ICF to statistical collections. The Guidelines have been re-revisited in 2007. The 2007 version has integrated developments in the area of disability statistics since 2001, and it recommends that disability be measured within the conceptual framework of the ICF. The Statistics Division of the United Nations has further established DISTAT which is the Disability Statistics Database for Microcomputers established by United Nations Statistics Division. DISTAT contains disability statistics from national household surveys, population censuses, and population or registration systems. DISTAT 2 covers 179 national studies across all regions of the world. Washington City Group on Disability Statistics The Washington Group on Disability Statistics was formed as a result of the United Nations International Seminar on Measurement of Disability that took place in New York in June 2001. An outcome of that meeting was the recognition that statistical and methodological work was needed at an international level in order to facilitate the comparison of data on disability cross-nationally. Consequently, the United Nations Statistical Division authorized the formation of a City Group to address some of the issues identified in the International Seminar and invited the National Centre for Health Statistics, the official 16

health statistics agency of the United States, to host the first meeting of the group. The main purpose of the Washington Group on Disability Statistics is the promotion and coordination of international cooperation in the area of health statistics by focusing on disability measures suitable for censuses and national surveys which will provide basic necessary information on disability throughout the world. The objectives of the WG were defined as: 1. To guide the development of a small set(s) of general disability measures, suitable for use in censuses, sample-based national surveys, or other statistical formats, which will provide basic necessary information on disability throughout the world; 2. To recommend one or more extended sets of survey items to measure disability or principles for their design, to be used as components of population surveys or as supplements to specialty surveys; and 3. To address the methodological issues associated with the measurement of disability considered most pressing by the WG participants. The World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) has been accepted as the basic framework for the development of the sets. All disability measures recommended by the group, general or extended, will be accompanied by descriptions of their technical properties and methodological guidance will be given on their implementation and their applicability to all sections of the population. The WG has also discussed various methodological issues in disability measurement including the purposes of measurement, the ICF model, the UN standard disability tables, global measures of disability, the relationship of global measures to the ICF, the confounding function of assistive device use, cultural practices that influence the nature of the environment or proscribe participation, cultural issues that act as barriers to collecting data and cross-national comparability of information. 4.4. International Classification of Functioning, Disability and Health (ICF) The WHO s ICF is a scientific tool for consistent, internationally comparable information about the experience of health and disability. 35 ICF reflects the modern day thinking about disability and embodies a paradigm shift in the way health and disability are understood and measured. ICF was endorsed by all 191 member states of the World Health Assembly in May, 2001 and WHO strongly recommends its use for all health and disability statistics worldwide. 36 Box 4: The International Classification of Functioning, Disability and Health (ICF) provides a standardized framework for conceptualising disability Using ICF is recommended to improve consistency of surveys ICF is WHO s framework for health and disability. It is the conceptual basis for the definition, measurement and policy formulations for health and disability. It is a universal classification of disability and health for use in health and health related sectors. ICF therefore looks like a simple health classification, but it can be used for a number of purposes. The most important is as a planning and policy tool for decision-makers. Source: World Health Organization (2002) Towards a Common Language for Functioning, Disability and Health The International Classification of Functioning, Disability and Health (ICF). WHO/EIP/GPE/CAS/01.3 Geneva, World Health Organization. P. 2 Underlying principles of ICF 37 35 World Health Organization (2002), Supra note 3, p.5 36 WHO/ESCAP, supra note 15, p.9 37 Washington Group on Disability Statistics, Understanding and Interpreting Disability as Measured using the WG Short Set of Questions (WG, 04/20/09), p.13-14 17

There are general principles that underlay the conception of ICF as a health classification of functioning and disability, and are closely linked to the bio-psychosocial model of disability. These principles are: UNIVERSALITY: A classification of functioning and disability should be applicable to all people irrespective of health condition. Therefore, ICF is about all people. It concerns everyone s functioning. Thus, it should not become a tool for labeling persons with disabilities as a separate group. PARITY: There should not be, explicitly or implicitly, a distinction between different health conditions as mental and physical that affect the structure of content of a classification of functioning and disability. In other words, disability must not differentiated by etiology. NEUTRALITY: Wherever possible, domain names should be worded in neutral language so that the classification can express both positive and negative aspects of each aspect of functioning and disability. ENVIRONMENTAL FACTORS: In order to complete the social model of disability, ICF includes Contextual Factors, in which environmental factors are listed. These factors range from physical factors such as climate and terrain, to social attitudes, institutions, and laws. Interaction with environmental factors is an essential aspect of the scientific understanding of the phenomena included under the umbrella terms functioning and disability Disability therefore involves impairments, activity limitations and participation restrictions. The formal definitions of these components of ICF are provided in the box below. Box 5: Body Functions are physiological functions of body systems (including psychological functions). Body Structures are anatomical parts of the body such as organs, limbs and their components. Impairments are problems in body function or structure such as a significant deviation or loss. Activity is the execution of a task or action by an individual. Participation is involvement in a life situation. Activity Limitations are difficulties an individual may have in executing activities. Participation Restrictions are problems an individual may experience in involvement in life situations. Environmental Factors make up the physical, social and attitudinal environment in which people live and conduct their lives. 5. Findings and Discussion 5.1. General Information on Disability Data Collection Instruments In general the main types of instruments for collecting data about persons with disabilities are population censuses, sample surveys (either general social surveys or specific health and disability surveys) and administrative collections and registries. The Population Census certainly has the advantage of providing complete population coverage. Unfortunately, it is difficult to collect accurate information about disability in a census since time constraints make it unlikely that more than 4 to 6 general disability questions can be asked. Censuses, in some instances, also undercount children with disabilities and people with mild or moderate disabilities (in cases where the response categories are limited to Yes or No options only). Still, for a crude measure of disability, and in the absence of other collection instruments, the census is useful. Sample surveys are shorter surveys designed to be administered to a subpopulation selected by some other instrument (often a census) that focus on specific issues. They are often put into the field to answer specific questions about a population. As such, they provide the opportunity to ask more detailed 18

questions about disability. More detailed information is useful in itself, of course, but it also helps to reduce the number of false positive and negative responses, thereby offering a more accurate prevalence measure. A sample survey may be an independent survey focusing entirely on disability, or a disability module added to an existing survey. Administrative collections and registers are composed of data that is collected as part of the normal operation of some service or programme. An example is the information found on a client intake form. These collections provide useful information on the characteristics of people accessing disability services as well as details about the services provided. They cannot give an accurate measure of disability prevalence since there is no guarantee of coverage and they tend to incorporate double counting. The quality of administrative register data is closely related to the quality of the administrative system, in particular, how well it has been maintained and how closely the concepts align with the disability concepts of interest. Each of these tools can be used to measure aspects of disability in a population and each has its strengths and weaknesses. The following table provides advantages and disadvantages of each instrument. 38 Table 1: Advantages and disadvantages of data collection methods Population Census Advantages Data can be tabulated for small, local areas. Prevalence rates can be calculated for small geographical areas because data are also gathered for the population at risk. Detailed descriptive cross-tabulations are not subject to sampling errors. If disability questions remain comparable, they can be useful analysis of disability rates across time. Identified set of persons with disabilities is usually large, allowing more detailed crosstabulations and analyses. Can provide a useful sampling frame for research on persons with disabilities who are otherwise difficult to find. Disadvantages Questions limited to basic socioeconomic and demographic characteristics, restricting the scope of disability questions. Data collection is infrequent usually every 10 years. The time between data collection and data dissemination can be considerable. In some censuses, populations in institutions with disabilities may not be included. Subject to high non-response rates and under-enumeration because of the complexity and sensitivity of the question. It is costly and time-consuming to identify a relative small population of persons with disabilities by asking questions of the entire population. May be too costly to train enumerators in the specific guidelines required for disability questions. Advantages Sample Surveys Disadvantages 38 Information on the advantages and disadvantages of each instrument is taken from WHO/ESCAP, Training Manual on Disability Statistics, pp.45-47 19

Flexibility in the depth and range of topics covered. Special probes can be used to ensure that persons with disabilities are identified. If sampling frame and survey infrastructure in place, relatively easy to initiate. If comparable with census and other surveys, can be used for detecting change over time. Because of limited coverage and smaller sample, there is greater control over the conditions of observation and interviewing. Capacity to locate persons with disabilities can be increased with design modifications (e.g. co-coordinating probability sample selection with the census, using registered population lists, stratifying the sampling stage, or increasing the sampling fraction). Greater opportunity for field work supervision, specialized field training, question pre-testing Limited sample size for small geographic area resulting to higher sampling errors, thus, limited ability to analyze prevalence rate for local areas. Persons with disabilities account for less than 20 percent of any population, so unless the survey is very large, the sample size of persons with disabilities will be small Coverage poor for institutionalized persons, the homeless, refugees or nomadic populations. Time-series analysis of ad hoc surveys is uncertain. Detailed surveys require close supervision of fieldwork and special disability training for field supervisors and interviewers. Advantages Registration Data Collection Disadvantages Easy to initiate. Extent of coverage and the degree of representation are unknown and sampling error cannot be estimated. Can provide a large number of cases for complex data analysis where extensive crosstabulations and disaggregation are required. May be used to assist governmental and private agencies (e.g. social security and social welfare offices and medical and educational organizations) locating persons with disabilities in need of services. May be used to prepare sampling frame for research on populations with specific disabilities. Does not require a large, on-going staff. Population at risk is unknown, so prevalence and incidence rates of disability cannot be calculated. Double counting is a problem, given many classes of informants and multiple registration lists of registered persons with disabilities. Findings can be easily or validly extrapolated to a larger population of persons with disabilities. 5.2. Definitions and Classifications of Disabilities General In Ethiopia, several legislative and regulatory instruments provide definition of disability or person with a disability. In order to see progresses made in conceptualizing disability in the country, we begin by considering legislative and regulatory texts adopted years ago and which describe or define disability or persons with disabilities. The Emperor Haile Selassie I Order No. 70 of 1970 and Transitional Government of Ethiopia Proclamation No. 101 of 1994 are two of such instruments. Order No. 70 of 1970 of the Emperor Haile Selassie I, refer the disabled...as people who, because of limitations of normal physical or mental health, is unable 20

to earn their livelihood and do not have anyone to support them; and shall include any persons who is unable to earn their livelihood because they are too young or too old. 39 Proclamation No. 101 of 1994 Transitional Government of Ethiopia, on the other hand, describes a disabled person...as a person who is unable to see, hear or speak or is suffering from mental retardation or from injuries that limit him or her due to natural or man made causes; provided, however, that the term does not include persons who are alcoholic, drug addicts and those with psychological problems due to socially deviant behaviors. 40 Both the definitions don t fully reflect the bio-psychosocial model of understanding of disability. In fact, conception of disability reflected in the former instrument is closer to the charity model, whereas in the latter it is more of the medical model. As indicated earlier, currently the stated instruments are not authoritative texts concerning definition of persons with disabilities. As we shall see latter, there are more recent legislative or otherwise texts that provide more progressive definitions. As the focus of this discussion is on definitions applied in disability data collection, more description will be provided on the different definitions applied in each of the three types of disability data collection instruments latter. As noted before, population censuses, sample surveys (either general social surveys or specific health and disability surveys) and administrative collections and registries are sources of disability information or data in Ethiopia. We will now consider definitions and classifications of disability used in each types of data collection instrument. Sequence of the discussion is: census reports, sample surveys and administrative registries. Census Repor ts Census reports considered in this Section are the 1994 and the 2007 Population and Housing Census Reports of the Central Statistical Agency (CSA). Both the 1994 and the 2007 Census Reports are official sources on statistical information in the country. The 2007 Census Report is an update of the 1994 Census Report, so the 1994 Census Report will be considered first. The 1994 Population and Housing Census Report: According to the 1994 Census Report disability represents decrease or loss of to discharge various social or economic functions and for the purpose of the Census a person is deemed disabled if due to physical or mental injuries cannot fully perform activities that other healthy persons can do. This Census Report s definitions of disability and person with a disability is one dimensional in the sense that it is focused on the impairments of the person while as the same time it ignores the social dimension of disability. Moreover, question employed to identify persons with disabilities is Is there a member of the household who is physically or mentally disabled? If yes, state the type. This question is focused on body functioning rather than on activity or participation. 41 Thus framework for understanding disability the 1994 Census Report followed is much in tune with the medical model. Different disability types are classified by the Census, and these are: Totally blind Partially blind 39 JICA, Country Profile on Disability FEDERAL DEMOCRATIC REPUBLIC OF ETHIOPIA (Japan International Cooperation Agency, March 2002). p.9 40 Id. 41 Sebastian Buckup, The price of exclusion: The economic consequences of excluding people with disabilities from the world of work. (International Labour Office, 2009). p.36 21

Hearing problems Hearing and speaking problems Leg problems Hand/arm problems Leprosy Mental problems Others types of disability Multiple disability Not stated According to this Census Report, of the country s 53 million total population 988,885, or 1.85% of the total population, were persons with disabilities. Distribution of disability in rural and urban areas was 83% and 17%. National prevalence of disability according to disability type is depicted in the pie chart below. Figure 1: National prevalence of disability by type of disability National Disability prevalence rate the 1994 Census Report showed is much less than WHO s 10 percent estimate. This Report is acknowledged to have underestimated the number of persons with disabilities in the country. 42 Moreover, census question inquiring YES or NO response on disability status, such as the one in this Census Report, provides no option in between. And since disability often implies a very significant condition a positive response is considered as indicative of relatively severe form of impairment. Consequently, the question administered in the 1994 Census is considered ineffective to identify persons with less severe less visible disabilities. Besides, a research has noted that prevalence of disability reported by the 1994 Census Report has been a source of much argument and disagreement and that ILO (2009) has rejected it on the ground that the methodology used was not to the standard including the survey instruments as well as the person who collected the data. 43 42 International Labour Office, Employment of People with Disabilities: The Impact of Legislation (East Africa) Ethiopia Country Paper (ILO, 2004). p.3 43 Seleshi Zeleke, eleke, eleke, PhD, Disability and Development: The Need to Develop Disability-Inclusive PASDEP in Ethiopia (Poverty Action Network in Ethiopia PANE, March 2010). P.22 22

In addition to the above reasons, societal factor is also believed to have contributed to the expectedly low level of disability prevalence rate. In many communities there is a prevalent negative attitude towards disability and persons with disabilities. The stigma or shame associated with identifying oneself or family member as disabled would make persons with disabilities or their parents or guardians reluctant to disclose disability status when contacted for censuses. For this reason, the question Do you (or a family member have a disability? is particularly inadequate at identifying, for example, mental or psychological impairments, which tend to be particularly stigmatizing. The negative impact communities negative attitude has on disability data collection is a problem which has affected disability information or data producers in many parts of the world. As a global issue, it has captured the attention of the Washington City Group. The standard census questions the Group proposed focus on basic activities or major body functions and are formulated as Do you have difficulty walking, etc? For this reason, this type of question serves as a better basis for disability screening. For all the above reasons, disability prevalence figures generated in the 1994 Census Report is unlikely to be taken seriously. As a matter of fact, governmental and non-governmental organizations cite different disability prevalence figures than the ones generated by the 1994 Census Report. For example, the Ministry of Health (MoH) and the Ministry of Education (MoE) cite significantly higher figures in respect to certain disability types or categories are. Similarly the Plan of Action for Children cite much higher figure. Moreover, up until now international agencies and non-governmental organizations operating in Ethiopia continue to follow WHO s 10 percent estimate instead. The 2007 Population and Housing Census Report: As a more recently produced census report, the 2007 Census Report is expected to address the shortcomings of the 1994 Census Report and generate internationally comparable information which reveals a higher rate of disability prevalence rate. However, in general this doesn t seem to be the case. To begin with, conception of disability reflected in the Census Report appears to follow the one dimensional, medical model of understanding disability. According to this Report, a disabled person is defined as a person who was unable to carry out or limited in carrying out activities that others can do due to congenital or long term physical/mental disabilities. The Report further states: in general, a person was defined as disabled if due to physical or mental injuries could not fully perform activities that other healthy person could do. The meanings that can be drawn from such definitions as well as the terminologies employed, particularly in the second proposition, are strikingly similar to the 1994 Census Report. In contrast to the 1994 Census Report, census questions administered in the 2007 Census mirror standard census questions the Washington City Group proposed. Questions included in the 2007 Census are three: i) Does (NAME) have a problem of seeing, hearing, speaking and/or standing/ walking/seating, body parts movement, functioning of hands/ legs or mental retardation or mental problem or other mental/physical damages? ii) If yes, what is (NAME s) type of disability or problem? and iii) What was the cause of (NAME s) disability? The Census Report states that the three questions are formulated based on UN definition, recommendations and the previous experiences and in collaboration with the experts from the Ministry of Labor and Social Affairs, Confederation of the Disabled and Addis Ababa University. In regard to the first two questions, though English version of the Census Report uses the word problem, as opposed to difficulty - terminology used in the Washington Group proposed census questions- the language used in the Amharic and official text of the census question is chegere. This Amharic word 23

reflects the meaning of the word difficulty. It becomes even clearer when one considers definitions of each disability types provided in the Report (types of disability classified and their corresponding definition is provided in the box below). In the pertinent part of the Report the word difficulty that is consistently referred to, rather than the word problem. 24

Box 6: Blind - Persons who totally lost their vision. Seeing difficulty - persons with two eyes and with partial seeing ability were considered in this category. Persons with seeing difficulty are those who can t count fingers of hands at a distance of two meters or those who can t identify the individual standing four meters away from them. Persons who lost one of their eyes and became unable to fully see due to the problem in one eye affecting the other were considered as persons with seeing difficulty. Moreover, persons who were unable to do their work without the help of others because of weakness in seeing were considered as persons who have seeing difficulty. A person after wearing a pair of spectacles gets back his sight was not included under this category. Deaf - Persons who were not able to hear from both ears but can speak were grouped under this category. Hearing difficulty - Persons who totally lost hearing in one ear and partially hear by one or those who were able to hear partially by both ears were considered as persons with hearing difficulty. Dumb - Persons who were not able to speak at all but can hear were considered as dumb. Speaking difficulty - Persons who were not able to speak as a healthy person could speak or persons whose speech couldn t be understood clearly to others were considered as having speaking difficulties. Deaf mute - Persons who were not able to speak and hear at all were categorized as deaf mute. Disability in Hands - (Non functional upper limbs) Loss of one hand or both hands, paralysis of one hand or both hands or any other disability in one hand or both hands were taken as disability in hands. Persons who were unable to use one hand or both hands to hold or pick up anything, in attending their day-to-day work were considered as paralyzed hands not related to above types were considered as having other disability in hand/hands. Persons having any other type of disability in one hand or both hands not related to above types were considered as having other disability in hand/hands. Disability in Legs - (Non functional lower limbs) Loss of one leg or both legs, paralysis of one leg or both legs, or any other disability in one leg or both legs were taken as disability in legs. Persons having completely lifeless or inactive leg/legs were considered as paralyzed in leg/legs. Physical Organs Movement Difficulty - Any other specific physical organ movement difficulties (such as difficulties in seating, keeping balance, sever shaking, coordinated organs movement, etc) other than the disabilities of seeing, hearing/speaking, disabilities in hands or disabilities in legs were taken as physical organ movement difficulty. Mental retardation- in our census mentally retarded persons were taken as mentally disabled persons having difficulties in learning. A person whose social interaction is below expected and backward having low capacity of understanding, training with difficulties in helping themselves in attending their day-to-day activities or learning due to undeveloped brain was considered as mentally retarded. Mental Problem - Persons with mental illness due to unknown causes were not considered as disabled as long as they are treated and healed. It must be understood that there is a difference between mental problem and mental retardation and caution should be taken not to consider mental retardation and epilepsy as mental problem. Other - Persons identified as disabled and not classified in any of the above mentioned categories were considered in this group. Source-CSA 2007 Population and Housing Census Report pp.169-171 The Census s three questions are focused on activity and participation limitations and also incorporate the Washington City Group s recommended standards and tools in undertaking censuses. This positive attribute of the Report should by in large address some of the main shortcomings of the 1994 Census Report. This shouldn t however be taken to mean that the 2007 Census has fully adopted the Washington Group s proposed census questions. As described in the relevant part of this research, Washington City Group s proposed census questions further inquire degree or severity of difficulty experienced by providing four response categories for each impairment type, namely no difficulty; some difficulty; a lot of difficulty or; unable to do it. As one can notice by reading information provided in the Box above, questions administered in the 2007 Census don t incorporate all the four response categories. The Census does 25

not provide distinct response category questions for each impairment type. Degree of difficulty the 2007 Census set out to measure is rather blended in the different disability types and the options it provides for informants is limited than the proposed census provide. It is thus possible that such difference can result in disability prevalence figures. In sum, disability related questions administered the 2007 Census reflect by in large reflect ICF framework of understanding of disability and mirror to some extent Washington City Group s proposed census questions as well. In contrast, general description or definitions of disability and persons with disabilities the Census provide reflect the medical model of understanding. Therefore, in the Census there is inconsistent application of the concept disability. In this regard, articulating the purpose of the data collection could have avoided such inconsistency. However, in no part of the report the purpose of collecting disability data is articulated. Countries which started applying the Washington Group s proposed census questions, has generated a higher disability prevalence figures. Zambia is one among such countries. 44 Impairment focused censuses Zambia undertook in 1990 and 2000 have respectively produced disability prevalence rates of 0.9% and 2.7%. Questions administered in the two censuses are similar to the ones administered in the 1994 Population and Housing Census. In 2006 Zambia undertook living conditions survey following the WG proposed census questions, and overall disability prevalence figure generated accordingly was 17.8%. In the 2007 Census, the three census questions administered are formulated to better identify persons with disabilities than the 1994 Census. However, according to the 2007 Census Report, the number of persons with disabilities in the country is 805,492 which is 1.09% of the country s 73,750,932 total population. Disability prevalence figure the 2007 Census Report provides is thus not only much lower than WHO s 10% estimate, but is also lower than the 1994 Census Report. The report further reveals that women account for about 47% of persons with disabilities whereas men account for about 53%. 44 Mitchell E. Loeba et al, Approaching the measurement of disability prevalence: The case of Zambia (M.E. Loeb et al. / ALTER, Revue européenne de recherche sur le handicap 2 (2008) 3243), p. 37 26

Table 2: prevalence of disability in Ethiopia and Addis Ababa Disability Type Country Level Addis Ababa Level Prevalence Prevalence Percentage Prevalence Percentage by Disability Type by Disability Type Non-functional lower limbs, 160,172 20% 11,820 33% Standing, Walking Difficulty Seeing 154,634 19% 4,149 12% Blind 94,015 12% 3,090 9% Other 75,845 9% 2,807 8% Difficulty Hearing 73,632 9% 2,929 8% Non-functional upper limbs, 60,341 8% 2807 8% Gripping, Handling Body Movement Difficulty 48, 384 6% 2,404 7% Deaf and Unable to Speak 45,939 6% 1,273 4% Learning Difficulty 41,487 5% 2550 7% Deaf 27,288 3% 600 2% Difficulty Speaking 12,572 2% 475 1% Unable to Speak 11,183 1% 309 1% Other 75,845 2,807 Total 805,492 32,630 100% Nonetheless, it has been argued that WHO s 10% estimate is more reflective of the actual prevalence of disability in Ethiopia. Reasons thy forwarded to substantiate their proposition are: 45 1) the limited number and scope of the questions often included in census surveys obviously underestimate the disability population, 2) Ethiopia had been in long years of war which produced a large number of persons with disabilities, and 3) The recurrent famine and drought faced by the Ethiopian people is also expected to increase the number of persons with disabilities. In addition, the high magnitude of traffic accidents in the country and the resultant disability is another factor that can be considered here. In light of what has been discussed thus far, it is clear that tools, measurements and classifications the 2007 Census used in collecting disability data is different from the 1994 Census Report. Disability information generated accordingly cannot be comparable. 45 Seleshi Zeleke, Supra note 43, p.22 27

Survey Samples The 1995 Baseline Survey on Disability in Ethiopia 46 is an example of survey sample in Ethiopia dedicated to disability issue. In general, this survey was conducted to generate representative information on the conditions of persons with disabilities in Ethiopia. The Survey was conducted for the following purposes: 47 determining type and level of disabilities in the country; assessing the general condition of persons with disabilities in the country; collecting quantitative and qualitative information on disabilities; identifying and describing the socio-cultural factor affecting persons with disabilities; securing information on attitude and perception of disabilities; and Compiling statistical data on disabilities. Obviously, the stated purposes of data collection are not articulated in accordance with ICF s domains of disability data collection. Moreover, the Survey is limited in scope to children with obvious disabilities. 48 It follows that disability data collection approach followed in the Survey is the impairment approach, based on the medical model. Accordingly, the stated major shortcomings of the 1994 Census Report are also applicable in the Survey. Disability prevalence figure the Survey can generate would not be expected to be high, not to mention that it cannot be internationally comparable. In fact, it has been expressly acknowledged that less obvious and hidden disabilities which may have imposed limitations on daily activities could not have been captured by such a survey. 49 Though produced within similar time frame as the 1994 Census Report, the Survey report provides different disability prevalence figure than the Census Report. According to the Survey Report, the country s disability prevalence figure is 2.95%. Indeed, the 2.95% figure is higher than the 1.85% figure generated by the 1994 Census Report, yet it remains to be much lower than WHO estimate. Likewise, disability type classification used in the Survey Report is different from that used in both Census Reports. Accordingly, information or data generated by the Survey and Census Reports cannot be compared. Information on distribution of disability according to disability type is provided in the Chart below. Figure 2: - 1995 Survey Report on the Prevalence of Disability by Type at the National Level Cognitive Disability, 6. 50% Speech and Language Imapairment, 2.40% Behavioral Problem, 2.4 0% Multiple Disability, 2 % Motor Disorder, 41. 20% Hearing Impairment, 14.90% Visual Impairment, 30.40% 46 Tirussew et al, Baseline Survey on Disability in Ethiopia, (1995, Institute of Educational Research, Addis Ababa University) 47 JICA Supra note 39, p. 11 48 Tirussew Teferra, Supra note 2,P.3 49 Id. 28

Administrative Registries Governmental and non-governmental organizations involved in disability-specific service provision gather information on persons with disabilities as part of service administration procedure. Private institutions especially insurance companies also gather such information. Government organizations collect disability information or data to determine a person s eligibility for awarding pension or determining compensation for injury. Likewise, non-governmental organizations particularly those involved in Community Based Rehabilitation (CBR) services maintain disability data or information to identify target beneficiaries. Non-Governmental Organizations Mechanisms non-governmental organizations use in collecting disability data is different. The most common mechanisms are surveys and administrative registries. Few research reports show availability of surveys carried out by or with the involvement of NGOs. However, such surveys are thematically and geographically limited, and as such it is hard to consider them as research reports providing general information on national disability prevalence. For one, often the surveys are conducted in the form of baseline studies to generate information in respect to specific disability types and also to solicit purpose specific data for a project. Similarly, the scope of the studies is confined to project target area. In view of the fact that ICF is not widely known amongst NGOs in Ethiopia, let alone to be practiced in disability data collection the comparability of data generated accordingly is questionable. As a matter of fact, a research report which considered the issue has pointed out that there is a need to develop a model geared towards generating accurate and consistent disability prevalence rate at local level. 50 The other mechanism NGOs use to collect disability data is though administrative registries. A very good example in this regard are NGOs working on CBR. These organizations identify and determine target beneficiary including through undertaking door to door visit in respective areas of operation. They have client intake forms wherein target beneficiaries disability profile is recorded. Definitions of disability (and also classifications of disability) these organizations adopt for identifying and determining a person s disability is as diverse as their mandates, type and extent of service they set out to provide. In other words, these organizations define disability in a way that may expand or narrow who qualifies as a person with disability. In addition, different NGOs focus on specific aspects of disabilities. Coupled with unfamiliarity of many of such NGOs with ICF, it is hard to find a coherent set of definitions even in respect to one aspect of disability. Governmental Organizations Government organizations on the other hand follow detained rules and procedures to determine eligibility of service beneficiary. The rules and procedures are established by legislations and/or other regulatory texts and these texts provide description or definition and classifications of disability, criteria for eligibility and the mechanism for determining eligibility. In this regard, the 2003 Labour Proclamation is a good example. Labour Proclamation- No. 377/2003: The 2003 Labour Proclamation is a federal legislation which governs employment relationship of employee and employer. One of the issues this Proclamation addresses is severance pay and compensation to an employee who has become disabled. According to Article 39 (1) (f) of the Proclamation, an employee whose employment contract is terminated due to partial or total disability has the right to get severance 50 CARDOS /Action Aid Ethiopia, Supra note 2, p.23 29

pay from the employer. If the worker s disablement is caused by employment injury Article 107 provides that the worker is entitled to (1) (a) periodical payment while he is temporarily disabled; and (1) (b) disablement pension or gratuity or compensation where he sustains permanent disablement. Articles 99-101 provide the definition and classifications of disability. Disablement according to Article 99 (1) is any employment injury as a consequence of which there is a decrease or loss of capacity to work. Effects of disablement can be temporary, permanent partial or permanent total (Art. 99 (1)). Articles 100 and 101 define the different effects of disablement. As per Article 100 temporary disablement results from the reduction for a limited period of time of the worker s capacity for work partially or totally. And Article 101 reads: 1) Permanent partial disablement means incurable employment injury decreasing the injured worker s capacity. 2) Permanent total disablement means incurable employment injury, which prevents the injured worker from engaging in any kind of remunerated work. 3) Injuries which, although not resulting in incapacity for work, cause serious mutilation or disfigurement of the injured person shall be considered permanent partial disablement, for the purpose of compensation and other benefits. Mechanism by which existence of disablement and degree of disablement is determined is through certificate issued by competent medical board. Orthopedic Medical Board at Tikur Anbessa Hospital and the Medical Board at Amanuel Psychiatric Hospital have a recognized competence. Respectively the two Boards assess the physical and mental disability of persons and issue such certificates not only for purposes including to courts, insurance companies and compensation institutions including government. 51 It should be noted here that the Federal Civil Servants Proclamation- No. 262/2002 incorporates provisions similar on identification and determining pension and compensation for civil servants who become disabled while working. 5.3. Participation of PwDs Participation of persons with disabilities in development of disability statistics is considered as a crucial matter. Their participation in research contributes to the quality of the research, sense of ownership among persons with disabilities and to its application at different levels. 52 Furthermore, it is argued that participation brings important competence to the research. 53 In the 2007 Census, Federation of Persons with Disabilities has participated in the development of the statistics. Modality of the Federation s participation is 1) through an assigned staffer who regularly convened in the meetings of the pertinent technical committee and 2) by providing training of trainers to CSA staffers, who in turn would provide training for census enumerators. Indeed, participation of persons with disabilities will be more effective if they are represented through well functioning DPOs. Beyond that, DPOs meaningful participation requires capacity to positively influence the process. Furthermore, DPO staffer knowledgeable about ICF and the Washington Group s standards is likely to contribute more in the process. However, in Ethiopia persons with disabilities who have organized themselves in associations or selfhelp groups are believed to be insignificant. Moreover, persons with disabilities and by in large DPOs are unfamiliar with ICF. The Federation cannot tell about the capacity or competency of the person assigned to participate. 51 Lambisso W. Biruk iruk iruk M.D, Permanent Civilian Musculoskeletal disability following injury-17 Year trends. East and Central African Journal of Surgery. Vol. 11, Num. 1, 2006, pp. 41-48 52 Arne H. Eide, Mitch E. Loeb, Supra note 1,, p.23 53 Id. 30

5.4. Overall Assessment of Instruments, Gaps and Challenges Available statistical information on the prevalence of disability in the country cannot be taken seriously. Prevalence figures generated by the 1994 and 2007 census Reports and by the 1995 Baseline Survey Report are much less than WHO s 10% estimate. Disability prevalence rate each Report revealed is different. Table 3: Reported disability prevalence rate by different studies Source (Year) Kind of Study Proportion of the total population Estimated number of persons with disabilities Central Statistical Authority (1994) Census 1.85 988,849 Tirussew and Baseline Survey 2.95 1,435,000 Associates (1995) Central Statistical Census 1.09 805,492 Authority (2007) World Health Organization (WHO) 10 7,391,850 The stated Census and Survey Reports have yet to operationalize ICF as a framework for understanding disability. ICF should form the basis for operational definition for data collection, etc. Though census questions in the 2007 Census reflect to some extent international developments in disability statistics, Washington Group proposed census questions have not been not sufficiently. Despite the progressive census questions it incorporated, disability prevalence figure the 2007 Census Report generated is surprisingly lower than the 1994 Census Report. This indicates a gap in the administration of census questions and other methodological issues. 31

6. Conclusions and Implications 6.1. Conclusions Major disability statistical and data sources in Ethiopia show a much less disability prevalence figure than WHO s 10% estimate. 1.85%, 1.09% and 2.95% prevalence figure the 1994 and 2007 Census Reports and the 1995 Survey Report reinforce the statement. While there are many reasons given to explain such a huge discrepancy, the following four are considered the main reasons in Ethiopia s context. One is negative attitude towards disability and persons with disabilities prevalent in some cultures, which make parents reluctant to disclose PwD family member when contacted for census or surveys, for example. The second reason is absence of an established system for detecting persons with invisible or less visible disabilities coupled with parents and communities low level awareness on these types of disabilities. The low technical competency of survey or census takers is the third reason given. The fourth and major reason forwarded relates to the relative nature of the concept disability and the implications it has in disability collection. Indeed, it is difficult to imagine internationally comparable disability data in the absence of a common operational definition of disability that guides countries such as Ethiopia in measuring and collection of disability information. The fourth reason is forwarded not only to explain the discrepancy between WHO s estimates and domestic data sources, but also to explain inconsistency of figures observed between domestic data sources. As noted before, information the three domestic sources provide on the prevalence of disability in the country is inconsistent. Such inconsistency is mainly explained by differences in conceptualizing disability as well as in measurements and classifications used for collecting disability data. Moreover, inconsistency of figure is observed even between data produced within similar timeframe, namely the 1994 Census Report and the 1995 Survey Report. Since various statistical or otherwise data cite different figures on prevalence of disability in the country, it is unlikely that any the three sources can be treated with certainty. It is no wonder therefore that disability prevalence data the Ministry of Health (MoH) and the Ministry of Education (MoE) cite in respect to certain disability types significantly differ from data generated by the Census and Survey reports. Data producers understanding or conceptualization of disability determines operational or otherwise definitions they adopt for purpose of data collection. To put it differently, model of understanding disability data producers follow correlates with the definition, classifications, and measurements they apply in data collection. Experiences from other countries depict that a wider definition of disability produces a higher national prevalence rates (about20%) and conversely a narrower definition produces a lower national prevalence figures (1% or less). In addition to the stated census and survey reports, governmental and non-governmental organizations involved in the provision of disability-specific services gather information on persons with disabilities as part of service administration procedure. Moreover, private institutions especially insurance companies also gather such information. Government organizations collect disability information or data to determine a person s eligibility for awarding pension or determining compensation for injury. Definitions, classifications and measurements applicable for determining eligibility are governed by legislation and regulations. And it is medical professionals alone that make such determinations. Approach these professionals follow in the determination process is impairment approach, based on the medical model. Likewise, non-governmental organizations particularly those involved in Community Based Rehabilitation (CBR) services maintain disability data or information to identify target beneficiaries. Definitions of disability (and also classifications and measurements of disability) non-governmental organizations use in identification and determining a person s disability is as diverse as their mandates, type and extent of 32

service they set out to provide. In other words, these organizations define disability in a way that may expand or narrow who qualifies as a person with disability. In addition, different NGOs focus on specific aspects of disabilities. Coupled with unfamiliarity of many of such NGOs with ICF and the Washington Group, it is hard to find a coherent set of definitions, classifications and measurements of disability capable of producing internationally comparable data. In order to produce consistent and internationally comparable disability data in Ethiopia, all disability information or data producers need to fully and meaningfully implement ICF and Washington Groups standards in collecting and measurement of data collection. However, actors involved in collecting disability data in Ethiopia have not fully used ICF as a model conceptual framework in their work. Same is true in respect of Washington Group standards. The fundamental question surrounding the reliability and comparability of disability information or data in the country will continue to be unanswered if the current situation is allowed to continue. But this question has to be answered sooner than latter, and domestic disability data producers need to operationalize ICF and the Washington Group in their works sooner than later. 6.2. Implications for Guidelines Development The findings of this research suggest that the Guidelines to be produced subsequently should be able to address the following areas of concern: It is necessary to develop designs for disability statistics in Ethiopia. This includes standardised measurements on disability as well as application of ICF in disability research; WHO s ICF should provide the conceptual framework and standard of language for disability information and data producers in Ethiopia; In order to operationalize ICF and produce internationally comparable disability data, it is important that data producers follow disability data collection standards developed by the Washington Group s; Capacity of disability data producers need to be enhanced in the areas of data collection methods and instruments, covering censuses, surveys and administrative collections of disability data; Data producers need to be aware of attributes of quality disability survey data and particular disability data collection issues; In disability statistics development principles from participatory research should be followed, DPOs should participate fully and meaningfully. DPOs will in particular need long-term training and capacity building in order to play a leading role in disability research. Researchers and research institutions involved in disability research need to be sensitized to the particular challenges inherent in participatory research with DPOs playing a leading role. 33