Regional Workshop on Monitoring the Implementation of the Biwako Millennium Framework for Action towards an Inclusive, Barrier-free and Rights-based Society for Persons with Disabilities in Asia and the Pacific (BMF)
Bangkok, Thailand, 13-15 October 2004

GENERAL
ENGLISH ONLY
UNITED NATIONS
ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC

Regional Workshop on Monitoring the Implementation of the Biwako Millennium
Framework for Action towards an Inclusive, Barrier-free and Rights-based
Society for Persons with Disabilities in Asia and the Pacific (BMF)
13-15 October 2004
Bangkok

WORKING DOCUMENT 1

Issues in Identification of Indicators of Progress in Implementing the Biwako Millennium Framework for Action towards an Inclusive, Barrier-free and Rights-based Society for Persons with Disabilities in Asia and the Pacific (BMF)

INTRODUCTION

During the first-half of 2004, the United Nations Economic and Social Commission for Asia and the Pacific (ESCAP) circulated to Governments as well as non-governmental organizations athe questionnaire to collect information on progress in implementing the seven priority actions identified in the Biwako Millennium Framework (BMF) to promote the "goals of an inclusive, barrier-free and rights based society for persons with disabilities in the Asia and Pacific region."^[1] Replies were submitted by 23 Governments,^[2] from all ESCAP sub-regions, two National Human Rights Commissions – Fiji and Thailand – as well as from 18 non-governmental organizations of or concerned with persons with disabilities.^[3] Responding Governments represent 50 per cent of the signatories to the "Proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region". More than 60 per cent of responding NGOs are members of the Asia-Pacific Disability Forum^[4]– a regional consultative mechanism to promote awareness and mobilize support for BMF.

Questionnaire replies produced a great deal of empirical data on progress in implementing BMF targets and strategies and document the important contributions of Governments as well as the non-governmental community to further implement the BMF goals of an "inclusive, barrier-free, rights-based society for persons with disabilities in Asia and the Pacific." The majority of responding Governments: (1) reported on the adoption – or formulation - of a national plan of action to further implement BMF; (2) have both a national coordinating committee - or similar mechanism - on disability, and mechanisms for consultations with organizations of persons with disabilities and civil society organizations on formulation and monitoring of legislation, plans and programmes that affect their well being and livelihoods; and (3) support and are contributing to the elaboration of a new international convention to promote and protect the rights and dignity of persons with disabilities.

The volume of data produced by the first questionnaire to Governments and the non-governmental community begs the question of introduction of an appropriate set of indicators by which to assess regional progress in implementing BMF targets and strategies.

This paper reviews issues associated with identification and development of a set of indicators related to BMF targets and strategies and will outline a set of selected progress indicators– both quantitative and qualitative.

UN ESCAP has already made important substantive contributions to the task of identifying and developing indicators for selected international instruments, in particular its "Gender indicators for monitoring the implementation of the Beijing Platform for Action on Women in the ESCAP region".^[5]

The UN ESCAP experience in identification and development of gender indicators provides a great deal of useful experience and substantive resources for the current task of identifying a set of indicators related to BMF. However, there is one major difference that impacts on the task of identifying BMF indicators: gender indicators relate to specific attributes populations – women and men. BMF is concerned with advancement of persons with disabilities in Asia and the Pacific; and disability is a condition – and not an attribute – for which there is no consensus definition for purposes of international comparisons.

The paper is in three sections. The first will review briefly the question of data and statistics related to persons with disabilities. The second section discusses issues related to identification and development of indicators on progress in implementing BMF targets and strategies, and the third outlines a set of selected indicators of progress in achieving BMF targets and strategies.

A great deal of important conceptual and substantive work concerning definitions of disability for collection and dissemination of statistics on disability has been carried out by the United Nations system, notably by the Statistics Division, Department of Economic and Social Affairs of the United Nations Secretariat, and the World Health Organization, However, the absence of a consensus definition on disability for purposes of international comparisons is a major constraint on the identification of practical, reliable and timely measures of progress in implementing BMF targets and strategies.

Definitions of disability are considered in a draft article – 3 – of the draft text of the new international convention that is now being elaborated on protection and promotion of the rights and dignity of persons with disabilities.^[6] Definition is important, since binding international instruments must identify clearly and unambiguously the population to which its provisions apply.

The draft text of the new international convention also includes a draft article – 6 – on Statistics and data collection, in which special attention is accorded to respect for privacy and that whatever data are collected do not infringe on the rights of persons with disabilities. In the debate on the drafting of the draft text, some delegations strongly supported inclusion of an article on statistics and data collection in the text of the convention for several reasons: data collection is recommended in Rule 13 of the Standard Rules; its inclusion could allow States to respond more effectively to the needs of persons with disabilities and have an accurate assessment of the situation of the persons concerned in order to implement programmes for their benefit. Other delegations expressed opposition to inclusion of an article on statistics and data collection in the convention. Concerns were expressed about the respect for the right to privacy and the risk of misusing the information. Views were expressed that such an article did not belong in a human rights treaty; statistics were not useful as a policy tool, and that resources spent in data collection should be used instead in programmes for persons with disabilities. There should be a mainstreaming of surveys and not just surveys for persons with disabilities.[7]

These draft articles are still before the Ad Hoc Committee of the General Assembly that is considering the new international convention, but their respective substantive issues will be considered in the following sections.

I. Issues related to data and statistics on disability for purposes of international comparisons

Collection of data and preparation of statistics on disability has long been a concern of the international community. It is important to recall that the World Programme of Action concerning Disabled Persons, which was adopted by the General Assembly in 1982, called upon the United Nations to cooperate with countries in "evolving a realistic and practical system of data collection … in regard to various disabilities … to be used as … tools and frames of reference for launching action programmes [for advancement of persons with disabilities]."^[8]

Moreover, Rule 13 – Information and research – of the "United Nations Standard Rules on the Equalization of Opportunities or Persons with Disabilities"^[9] urges that "States …, at regular intervals, collect gender-specific statistics and other information concerning the living conditions of persons with disabilities." General Assembly resolution 50/144 of 21 December 1995 encouraged the Secretary-General "to continue … efforts to facilitate the collection and transmission of relevant data to be used to finalize, in consultation with Member States, the development of global disability indicators."^[10]

In response to the mandates of the General Assembly, the United Nations Secretariat organized expert meetings, prepared technical guidelines and formulated recommendations on including questions on "disability characteristics" in the year 2000 population and housing censuses:

• In cooperation with the Central Bureau of Statistics of the Netherlands, the United Nations organized an "Expert group meeting on development of impairment, disability and handicap statistics" (Voorburg, Netherlands, 7-11 November 1994), which reviewed existing disability data collection methods and standards, and identified a set of guidelines for use in censuses, surveys and registrations. The meeting outcome was incorporated in the Guidelines and Principles for the Development of Disability Statistics,[11] published in 2001 by Statistics Division, Department of Economic and Social Affairs

• The Manual for the Development of Statistical Information for Disability Programmes and Policies was published by the United Nations in 1996.^[12] The Manual, prepared in collaboration with the World Health Organization (WHO) and financed in part by grants from the Swedish International Development Agency (SIDA) and a grant from the United Nations Voluntary Fund on Disability, aims to assist programme managers who produce and use statistical information in the implementation, monitoring and evaluation of disability policies and programmes.

• "Disability" was included for the first time as a topic in the revision of the Principles and Recommendations for Population and Housing Censuses (Revision 1) ^[13] for the year 2000 World Population and Housing Census Programme.

The definition of disability used in the World Programme of Action, the Standard Rules, the 1996 Manual and the recommendations to for the year 2000 round of the World Population and Housing Census Programme was based on the International Classification of Impairments, Disabilities and Handicaps (ICIDH) that had been issued by WHO in 1980, which identified three dimensions to study and monitor the situation of persons with disabilities:

• impairment: reduced function of an organ or body part;
• disability: reduced function and activity of a person; and
• handicap: social, economic and cultural circumstances that place persons with impairment or disability at a disadvantage relative to their peers.^[14]

Revision 1 of the Principles and Recommendations states, in paragraph 2.261, that "owing to the limited space available in a census, the focus should be on only one of the three ICIDH dimensions" – disability and suggest that the other dimensions be covered by household surveys.

The Principles further suggest, in paragraph 2.262:

"…to measure the disability dimension, a person with disability should be defined 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. Short-term disabilities due to temporary conditions such as broken legs and illness are excluded. Only disabilities lasting for more than six months should be included."

With regard to impairment and handicap, the Principles state, in paragraph 2.273:

"If a country places high priority on obtaining information, additional questions may be asked on impairments, on handicaps or on causes of disability. Although severity and duration of disability are of great relevance in the study of the situation of people with disability, a census questionnaire cannot collect good-quality data on these topics."

There were a number of criticisms of ICIDH, in particular its close association with a "medical model" (which defined disability as an "absence of health"), that it did not classify people different situations - the situation of impairment, the situation of disability and the situation of handicap,^[15] and that it did not address the environmental variables that can make an impairment of disability into a handicap.

Issues and trends in the definition of disability were considered at a United Nations "Interregional seminar and symposium on international norms and standards relating disability (Hong Kong, China, 13-17 December 1999) that was organized in cooperation of the Equal Opportunities Commission of Hong Kong, China. The seminar working group that considered the question identified two main categories of definitions of disability:

"The first category frames disability with reference to the individual and in terms of individual deficits. Within this category, definitions fall into two closely related subgroups. The first subgroup focuses on the individual, and might be called the biological or medical model. The second subgroup focuses on the promotion of fuller functioning in the individual and is characterized by the functional or rehabilitation approach. Most of these models assume a norm, below which a person should fall if she or he is identified as a person with a disability.

"The second category focuses not on the individual but on the social, economic, political, institutional and legal conditions that can result in disability. This second category likewise has two subgroups. The first subgroup might be called the environmental model. In this subgroup, attention is directed to the social, cultural and economic barriers of living with a disability. The second subcategory focuses on the rights to which all individuals in a society, including those with disability, are entitled. This subcategory is termed the human rights model."^[16]

Table 1.

Categories of definitions of disability^[17]

• Bio-medical definitions: direct attention to the delineation or listing of what physical, intellectual or sensory impairments an individual has to define whether he or she is included in the legislation.

• Functional definitions: differ from bio-medical definitions in that the focus is on actions or activities that an individual can perform. Most countries and organizations using functional definitions stress that reduction in function results from a bio-medical condition. Reduction in function can be considered in two different ways: (1) actual performance of an action or activity, or (2) need for help to conduct an action or activities. Some countries emphasize the bio-medical conditions that lead to a reduction in function, while others emphasize a reduction in function resulting from the bio-medical condition.

• Environmental definitions: direct attention to the role of social, cultural, economic or political limitations that result in disabilities. A physical, sensory or intellectual impairment will not limit many individuals as much as being denied an education, the right to employment, or the right to marry and have a family of their own. In response to this, laws and conventions increasingly have included environmental issues, seeking to address the structural conditions in society that may limit the options of people with disabilities. The focus of limitation has shifted from the individual to society. The structural conditions in society resulting in disability would need to be addressed and ameliorated.

• Human rights approaches: use a different lens to address disability. Rather than focus on disability from either an individual deficit or an environmental perspective, the human rights formulation is premised on the recognition of a set of fundamental rights to which all people are entitled. By addressing the rights of all people the definition is found with reference to the breach of these rights rather than the delineation of characteristics of the person, consequently reducing the need for a specific definition. The approach can make some uncomfortable because in the law there is a tradition of using "protected classes" as a unit of analysis - or the traditional way in which the rights of "vulnerable groups" are protected in domestic legal systems. If the class covered is undefined, this makes it difficult for Governments to define the scope of their various obligations.^[18]

In response to the critical discourse on ICIDH, WHO began work in the late 1990s on a revision, which was termed ICIDH-2 and that had the aim of providing a "unified and standard language and framework for the description of human functioning and disability as an important component of health". The proposed classification would cover any disturbance in terms of "functional states" associated with health conditions at body, individual and society levels. ICIDH-2 organized information according to three dimensions: body level; individual level; and society level:

• The Body dimension comprises two classifications, one for functions of body systems, and one for the body structure. The chapters of both classifications are organized according to body systems.
• The Activities dimension covers the complete range of activities performed by an individual. The chapters are organised from simple to complex activities.
• The Participation dimension classifies areas of life in which an individual is involved, has access to, and/or for which there are societal opportunities or barriers. The domains are organized from simple to complex areas.

ICIDH-2 would also include a list of environmental factors in recognition that they can impact on all three dimensions; they would be organized from the individual's immediate environment to the general environment.

Public comment and field trials on ICIDH-2 were completed by mid-2000. The revised text of ICIDH-2, re-titled the International Classification of Functioning, Disability and Health (ICF),^[19] was endorsed as a member of the set of WHO international classifications by the World Health Assembly on 22 May 2001.^[20]

ICF is a classification of health and health related domains that describe body functions and structures, activities and participation. Domains are classified from body, individual and societal perspectives. Since an individual's functioning and disability occurs in a context, ICF also includes a list of environmental factors.

"In the ICF framework disability and functioning are viewed as outcomes of interactions between health conditions (diseases, disorders and injuries) and contextual factors.

"Among contextual factors are external environmental factors (for example, social attitudes, architectural characteristics, legal and social structures, as well as climate, terrain and so forth); and internal personal factors, which include gender, age, coping styles, social background, education, profession, past and current experience, overall behaviour pattern, character and other factors that influence how disability is experienced by the individual."^[21]

The three levels of human functioning are classified by ICF: (1) functioning at the level of body or body part, (2) the whole person, and (3) the whole person in a social context. In the context of ICF, disability involves dysfunctioning at one or more of these same levels: impairments, activity limitations and participation restrictions. Definitions of these components of ICF are presented below:

• 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.^[22]

ICF provides a conceptual framework for the collection and classification of data on disability through standardized concepts and terminology, which facilitates international comparisons and thereby increases the relevance of the data to a wider range of end-users at all levels. By focusing on "functioning" and defining disability as an outcome of the interaction between a person with impairment and the environmental and attitudinal barriers he/she may face,^[23] ICF has also obtained considerable interest and support.

However, ICF is not without critics. Some have expressed the view that use of ICF, which links functioning and disability with health conditions and contextual factors, with the "Disability Adjusted Life Years" (DALYs)[24]to measure the health status of a country can result in analyses that are prejudicial to the situation of persons with disabilities. The state that ICF defines disability as impairment and lack of functioning,, which often is measured against life expectancy (DALY) with no recognition of the impact of discrimination, poverty, war or violence on persons with disabilities. They argue that disability is not a health issue but a socially- created mechanism to exclude persons with disabilities from social life and development; it is a way in which society systematically denies persons with disabilities with their "very humanity".[25] Disability is a human rights issue. Definitions of disability must be based on the "Social model of disability, which places a person's impairment in the context of the social and environmental factors which create disabling barriers to their participation in society.[26]

Other arguments relate to conceptual and substantive aspects of ICF.[27] First, that the ICF presentation of environmental elements requires re-organization in a way that clearly identifies the specific target areas for provision in the convention. These targets would relate to components of the environment in terms of its structure, its functions (what it does) and its characteristics (what it has). An example is presented of provisions that aim to influence the interaction of professionals with deaf people, for which the particular type of professional needs to be identified along with the functions and characteristics of that profession. The point is also made that in terms of organization, ICF environmental codes (ICF, chapters 1, 3 and 5) provide descriptions of products, technologies, services and policies, which may be considered environmental structures. These are environments but not environmental characteristics descriptors of what these environmental structures actually do to people in terms of environmental functions. The second issue relates to access, which is a basic human right. Since access can be examined from both an individual and environmental standpoint, more than one unit of analysis must be considered. Accessibility is important for the promotion and protection of rights of persons with disabilities, since it is an approach to reverse exclusion, promote inclusion and enhance equalization of opportunities in a positive and systematic way. Access is not an act or a state but a liberty to enter, to approach, to communicate with, to pass to and from or to make use of a situation.[28] Systematic elaboration of dimensions of access will provide dimensions of interactions between humans and their environments that must be assessed to enhance equalization of opportunity. The situation of persons with disabilities can be monitored along these dimensions to determine whether they have been assured their human rights either by promoting accessibility and equalization of opportunity or by preventing exclusion and handicapping conditions. Finally, the ICF, ICIDH, does not define disability per se. ICF thus encourages consideration of the variety of the disability experiences and the environments that shape them. However, it is argued that ICF cannot form the basis to organize information for an international convention, because many attributes related to human rights are not elaborated in ICF, which include marginalization and disadvantage;[29] access and social exclusion.[30]

A draft article on definitions of disability has been including the draft text of the new international convention on the rights of persons with disabilities by the Working Group established by the Ad Hoc Committee.

Draft Article 3 - DEFINITIONS⁹

• "Accessibility"¹⁰
• "Communication" includes oral-aural communication, communication using sign language, tactile communication, Braille, large print, audio, accessible multimedia, human reader and other augmentative or alternative modes of communication, including accessible information and communication technology.¹¹
• "Disability"¹²
• "Persons with disability"¹³
• "Discrimination on the ground of disability"¹⁴
• "Language" includes oral-aural language and sign language.¹⁵ "Reasonable accommodation"¹⁶
• "Universal Design", and "Inclusive design".¹⁷

Footnotes to Draft Article 3:

⁹: In the consideration of this article, the Ad Hoc Committee may wish to take into account the different proposals that were presented to the Committee and the Working Group regarding the specific definitions of the concepts herein contained.

¹⁰: The need for a definition of "accessibility" and the content of any definition will depend on the outcome of the discussion in the Ad Hoc Committee on draft Article 19 on accessibility.

¹¹: The Ad Hoc Committee may wish to consider the need for a definition of "communication" (separate from draft Article 13 on Freedom of Expression and Opinion, and Access to Information[31]) and, if so, the content of that definition.

¹²: Many members of the Working Group emphasized that a convention should protect the rights of all persons with disabilities (i.e. all different types of disabilities) and suggested that the term "disability" should be defined broadly. Some members were of the view that no definition of 'disability' should be included in the convention, given the complexity of disability and the risk of limiting the ambit of the convention. Other delegations pointed to existing definitions used in the international context including the World Health Organization's International Classification of Functioning, Disability and Health (ICF). There was general agreement that if a definition was included, it should be one that reflects the social model of disability, rather than the medical model.

¹³: Some members of the Working Group considered that it was more important to include this definition than the definition of "disability". Other members were of the view that a definition of this term was not necessary.

¹⁴: This definition is addressed in draft Article 7 on Equality and Non-Discrimination.[32] The Ad Hoc Committee may wish to consider the best placement for this definition.

¹⁵: Some delegations were of the view that the separate draft articles of the Convention specify that language included sign language, and questioned the need for this definition in the present article. Others expressed the view that the definition was needed.

¹⁶: The definition of this concept was not discussed beyond the definition that is included in draft Article 7 [on Equality and Non-Discrimination], although the Working Group considered necessary to include it.

¹⁷: These definitions were not discussed but the Working Group considered that they would be useful.

Source: <http://www.un.org/esa/socdev/enable/rights/ahcwgreporta3.htm>

Draft article 3, along with other draft articles for the new convention are still being considered by the Ad Hoc Committee.

At international and regional levels – and for many national statistical authorities - ICF provides a common conceptual framework and standardized concepts and terminology for collection of data on disability and production of statistics, although it is not without recognized limits and is not a consensus definition on disability.

Work continues at international and regional levels to improve the measurement of disability in populations for purposes producing increased, cross-nationally comparable statistics on disability. This is being carried out under the auspices of the "Washington Group on Disability Statistics" in cooperation with the Statistics Division, Department of Economic and Social Affairs of the United Nations Secretariat.[33] Progress in this area would be of considerable benefit to the task of monitoring and assessing progress in implementing BMF target and strategies for purposes of policy design, planning and improved programme execution from the disability perspective.

In 2005 the Statistics Division of the United Nations will initiate systematic and regular collection of basic statistics on human functioning and disability by introducing disability statistics questionnaire to the existing Demographic Yearbook[34] data collection system.

II. Issues in identification of indicators of progress in implementing BMF targets and strategies

A. Basic considerations

• Indicators can be quantitative or qualitative; they provide a means to assess achievement, change or performance. Any one goal or objective can have multiple indicators of performance.[35]

• Indicators can be "complex" – summarizing a number of variables - or "simple" – addressing a single variable.

Perhaps one of the best known complex indicator in the field international development cooperation is the "Human development index" that is calculated by the Human Development Office of the United Nations Development Programme (UNDP). HDI is based on three variables: (1) life expectancy at birth, (2) educational attainment in terms of adult literacy (populations aged 15 and older) and educational enrollment rates at primary, secondary and tertiary levels, and (3) gross domestic product per person (Purchasing Power Parity[36]) to ensure a decent standard of living. All variables are weighted equally in the calculation of a summary measure of human well-being among countries.[37]

HDI is not without critics, who have noted that it cannot capture short-run changes in human development in countries, and it is not sufficiently robust in distinguishing among the ranking of countries.

The UN ESCAP "Gender indicators" manual demonstrates how "simple" indicators can summarize a great deal of statistics into a useful measure on the state of a population or a target at a specific point in time or document changes occurring with respect to specific goals, objectives and targets.

In a general sense simple indicators are to be preferred, since changes can be more easily identified and assessed with respect to the variables on the indicator is based.

There are at least three practical considerations in the development of indicators: they should be (1) clear, relevant and suitable to the required use and interpretation, (2) simple and easy to compile and calculate – timely and reliable data are available, and (3) robust in their measurement of intended changes over time. Indicators must be disaggregated by gender and if possible by sub-national area or at least "rural" and urban".

While the focus of the present paper is on indicators of performance in implementing BMF targets and strategies, which reflects a substantive and managerial focus, the role of indicators in providing an empirical basis for advocating a specific policy agenda should not be overlooked,. A case in point is the use of the "Under-five mortality rankings" <http://www.unicef.org/files/Table1.pdf> by the United Nations Children's Fund (UNICEF) to promote support for its "Early Childhood Development" (ECD) efforts.[38]

Indicators related to persons with disability have been developed by a number of national authorities in line with national policy and legislation. For instance, the "Disability Equality Index" of Hong Kong, China is a useful example in the use of data from the census to assess the situation of persons with disabilities. The "Disability Equality Index" uses census data on literacy rates, educational attainment, labour participation, income, marital status and household formation for persons with a disability. Disability Equality Indexes are computed for these domains to reflect the relative position of persons with a disability to non-disabled persons.[39]

Progress in the development of global indicators on disability has been limited due to the question of defining disability for purposes of collecting and disseminating statistics for purposes of international comparisons.[40]

B. Identifying indicators of progress in implementing BMF

The approach of this paper in identifying indicators of progress in implementing BMF targets and strategies is to make maximum possible use of existing indicators and to indicate how disability-related considerations can be reinforced in existing data series. This is based on the premise that BMF indicators – and disability indicators in general – are not a special sub-discipline but part of mainstream policy research and evaluation.

In this regard it is also important to recall the critical BMF assessment of the state of disability statistics in Asia and the Pacific:

"Lack of adequate data has been one of the most significant factors leading to the neglect of disability issues, including the development of policy and measures to monitor and evaluate its implementation, in the region. In many developing countries, the data collected do not reflect the full extent of disability prevalence. This limitation results in part from the conceptual framework adopted, the scope and coverage of the surveys undertaken, as well as the definitions, classifications and the methodology used for the collection of data on disability. It is also recognized that a common system of defining and classifying disability is not uniformly applied in the region (BMF, paragraph 54)". [41]

The second consideration is that at this stage of BMF implementation, the focus will be on identifying indicators of output – immediate results of implementing BMF strategies - with outcome indicators – socio-economic, civil and participation changes resulting from results achieved in BMF implementation – identified as appropriate.

The third consideration is the framework for identification of indicators will build upon the logical framework identified in global assessments of progress in the implementing the World Programme of Action concerning Disabled Persons, for which there is more than 20 years of policy review experience. The third review and appraisal of the World Programme (A/52/351) provides a succinct introduction to the key factors frameworks:

• resources framework: knowledge, people, skills and finances;
• policy framework; and
• institutional framework, including coordination framework.[42]

The fourth consideration is conservation of resources and a focus on categories of data and sets of statistics that are already being used in policy reviews and analyses in the economic and social sectors - even if the respective statistical series may not currently be disaggregated by persons with disabilities and non-disabled persons. In connection with the year 2000 round of Population and Housing Censuses, the United Nations Revision 1 of the Principles and Recommendations identified seven tabulations to deal with disability characteristics:[43]

Group 8. Tabulations dealing with disability characteristics

• P8.1. Total population, by type of disability, ¹ geographical division, urban/rural residence, whether living in household or institution, age and sex.
• P8.2. Households with one or more persons with disability, by type, size of household, urban/rural residence.
• P8.3. Total population 15 years of age and over, by type of disability, marital status, urban/rural area, age and sex.
• P8.4. Population with disability, by cause and type of disability, urban/rural area, age and sex.
• P8.5. Population 5² to 29³ years of age, by school attendance, type of disability, urban/rural area, age and sex.
• P8.6. Population age 5 years of age and over, by educational attainment, type of disability, urban/rural area, age and sex.
• P8.7. Population 15 years and over, by activity status, type of disability, urban/rural area, age and sex.

Notes to the proposed tabulations:

¹ Types of disability are broad categories of disability based on the 1980 ICIDH codes, as follows: seeing difficulties (even with glasses, if worn); hearing difficulties (even with hearing aid if used); speaking difficulties (talking); moving/mobility difficulties (walking, climbing stairs, standing); body movement difficulties (reaching, crouching, kneeling); gripping/holding difficulties (using fingers to grip or handle objects); learning difficulties (intellectual difficulties, retardation); behavoural difficulties (psychological, emotional problems); personal care difficulties (bathing, dressing, feeding); others (specify). The sum of numbers under "type of disability" would not correspond to the reported population with disabilities since a person may have more than one disability

²Usual age to enter the first level of school.

³ Upper age-limit may be adjusted to reflect people with disabilities who attend school even in higher years.

A second concern for statistical development is identification of priorities for data collection and dissemination. During the 1990s the United Nations organized a number of major conferences and summits in the economic and social fields, whose outcomes find application in further implementation of the development goals of the Millennium Declaration. As a means to obtain greater focus in the analysis, planning and evaluation of follow up to these events, an international expert group was convened by the United Nations to identify a "Minimum national social data set" (MNSDS). Fifteen items were identified for a suggested MNSDS:

(a) Population estimates by sex, age and, where appropriate and feasible, ethnic group;

(b) Life expectancy at birth, by sex;

(c) Infant mortality, by sex;

(d) Child mortality, by sex;

(e) Maternal mortality;

(f) Percentage of infants weighing less than 2,500 g at birth, by sex;

(g) Average number of years of schooling completed, by sex, and where possible by income class;

(h) GDP per capita;

(i) Household income per capita (level and distribution);

(j) Monetary value of the basket of food needed for minimum nutritional requirements;

(k) Unemployment rate, by sex;

(l) Employment-population ratio, by sex, and by formal and informal sector where appropriate;

(m) Access to safe water;

(n) Access to sanitation; and

(o) Number of people per room, excluding kitchen and bathroom.

The experts noted that all the items in their MNSDS list should be produced and presented disaggregated by urban and rural areas, where the rural population is greater than about 25 per cent of the total population. However, the report of the experts makes no reference to the situation of persons with disabilities.[44]

The fifth consideration is that indicators of progress in implementing BMF targets and strategies will be both quantitative and qualitative, the later associated with "yes / no" responses concerning existence of a policy, service or institution. Quantitative indicators can be presented as a per cent, a ratio or an absolute number.

The indicator framework would first deal with "core" issues that are associated with preconditions for implementing BMF, which include governmental commitment in terms of national policy or plan of action – or both, a mechanism for consultation with organizations of disabilities and for coordination of governmental action, legislation and administrative guidance – or similar governmental instrument – to promote and protect the rights of persons with disabilities in both the social, economic and cultural realms and the civil and political realms, technical guidance in the form of national standards, codes or legislation on environmental accessibility – for both the built environment and information and communication technologies, data and statistics on disability in the population and appropriate mechanisms in place to protect privacy rights.

A set of progress indicators would be identified with reference to the seven BMF priority areas for action, even though not all seven priority areas have targets that are quantifiable. Priority areas 1 – self-help organizations, 2 – women with disabilities, and 5 - access to the built environment all have targets that require a binary response: yes or no concerning whether targeted action has / has not yet been accomplished. Priority areas 3 - early detection and education, 4 - training and employment, 6 – accessible ICT, and 7 – poverty alleviation all contain targets with quantifiable results. However, the limited availability of statistics on disability may result in a number of "empty cells" in the suggested list of data. This is not a criticism of BMF targets and strategies but an assessment and statement to clarify the assumptions that underlie the suggested set of indicators.

III. Outline of indicators of progress in implementing BMF targets and strategies

The outline of indicators on BMF follows the UN ESCAP "Questionnaire on implementation of the Biwako Millennium Framework and draws upon the suggested actions to achieve the BMF targets in the identification individual indicators.

The outline is in two main parts: indicators on preconditions for BMF implementation, and indicators on progress in implementing BMF targets and strategies. Implications for further development of the outline of BMF indicators are considered in the third section of this chapter.

A. Preconditions for BMF implementation

In line with the policies, institutions and resources frameworks used in evaluation of the World Programme of Action a modest re-ordering of UN ESCAP questionnaire BMF implementation is proposed.

Each indicator would compare progress with regard to all 53 ESCAP members and nine associate members for the respective variable.

1. Policy cluster. Indicators of national commitment should deal first with the existence of an appropriate national policy – or commitment in a mainstream policy - concerning persons with disabilities; a sub-question would indicate whether the constitution makes specific reference to rights of persons with disabilities or whether this presented in terms of "equal protection" for all citizens.

The second indicator would indicate governmental support of the regional action in the field of disability as reflected in their signature of the "Proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region"[45] A sub-question could address participation in the activities of the Ad Hoc Committee; eventually a sub-question will be needed on ratification or accession to the new international convention on the rights of persons with disabilities.

The third set of indicators would indicate whether a national plan of action on implementation of BMF has been formulated and adopted by Government; sub-questions would address plan coverage in terms of sectors, national territory and any special provisions [to be identified by open-ended reply].

2. Institutional cluster. The fourth set of indicators would focus on the existence of a national committee on disability or similar mechanism; sub-questions would address year of enactment, composition, functions.

The fifth set of indicators would address legislation or administrative guidance or both on the rights and dignity of persons with disabilities; sub-questions would address whether these are generic law that have specific disability provisions, specific legislation that addresses promotion and protection of the rights of persons with disabilities in both the social, economic and cultural realms and the civil and political realms – all, some or none of the realms, or a "comprehensive law' on persons with disabilities.

3. Resources cluster. The sixth set of indicators would indicate the availability of disability statistics, with sub-questions on coverage and collection instruments based upon the work underway on introducing disability data in the annual Demographic Yearbook of the United Nations from 2005. Collection of data on budgets may not be in formats that are meaningful for regional comparison. Data on technical cooperation activities of the United Nations will be discussed in connection with regional action.

B. Indicators of progress in implementing BMF targets and strategies

Progress indicators would be both qualitative and quantitative depending on the respective variable. Available data may not support international comparisons between persons with disability and non-disabled persons until there is consensus on definitions of disability.

Development of statistics disaggregated by type of disability will take time, which is recognized in the proposal of the Statistics Division of the United Nations Secretariat to include disability characteristics in the Demographic Yearbook from 2005. Introduction of disability characteristics to the annual Demographic Yearbook is based on collection of three categories of statistical information from countries, listed in the box below. These series are expected to provide basic information on populations with disabilities by age and sex, and on selected socio-economic characteristics of the population with disabilities. Since similar information is already collected for the population as whole in connection with the annual Demographic Yearbook, it is expected that these tables can be used to estimate the prevalence rate of disability in countries and provide a socio-economic profile of the population with disabilities compared to the non-disabled population.[46]

Demographic Yearbook, 2005: Proposed collection of statistics on disability

Statistical information to be requested relates to:

(a) Persons with disabilities by age, sex and urban/rural residence;

(b) Persons with disabilities 5 to 29 years of age by school attendance, single years of age and sex;

(c) Persons with disabilities 15 years and over by usual (or current) activity status, age and sex.

1. Indicators related to BMF Priority Areas for Action

(a) Self-help organizations (SHOs) of persons with disabilities. Persons with disabilities and their self-help organizations are best most equipped, and best informed to speak on their behalf and can contribute to solutions on issues that concern them.

Target 1. By 2004, Governments, international funding agencies and NGOs should establish policies with requisite resource allocations to support development of self-help organizations of persons with disabilities.

The basic indicator would be "Yes / No" policies and procedures are in place to support establishment and development of SHOs, the year this was achieved and target achievement in terms of ESCAP region attainment.

Sub- indicators will be presented with reference to per cent achievement by end-2004 and by actual effective date.

Target 2. By 2005, Governments and civil society organizations fully include self-help organizations in decision-making processes involving planning and programme implementation, which directly affect their lives.

The basic indicator would be "Yes / No" mechanisms and procedures are in place to support participation by persons with disabilities, including civil society organizations and SHOs, in decision making on plans and programmes, the year this was achieved and target achievement in terms of ESCAP region attainment.

Sub- indicators will be presented with reference to per cent achievement by end-2005 and by actual effective date.

(b) Women with disabilities. Women with disabilities are multiply disadvantaged through their status as women and as persons with disabilities, and are over-represented among persons living in poverty.

Target 3. By 2005, Governments, which have not already done so, are urged to ensure anti-discrimination measures, where appropriate, which safeguard the rights of women with disabilities.

The basic indicator would be "Yes / No" anti-discrimination measures exist to promote and protect the right of women with disabilities, the year this was achieved – or when existing anti-discrimination law was amended to address the case of women with disabilities and target achievement in terms of ESCAP region attainment.

Sub-indicators will be presented with reference to per cent achievement by end-2005 and by actual effective date.

Target 4. By 2005, national self-help organizations adopt policies to promote full participation an equal representation of women with disabilities in their activities.

Target 5. By 2005, women with disabilities should be included in the membership of mainstream national women's

The basic indicator for these complementary targets would be "Yes / No" NGOs/SHOs introduce policies and procedures to promote full and effective participation of women with disabilities in their activities, the year this was achieved and target achievement in terms of ESCAP region attainment.

Sub-indicators will be presented with reference to per cent achievement by end-2005 and by actual effective date.

(c) Early detection, early intervention and education. Data available suggest that less than 10 per cent of children and youth with disabilities have access to any form of education compared with an enrolment rate of over 70 per cent for non-disabled children and youth in primary education in the Asian and Pacific region. Exclusion of children and youth with disabilities from educational opportunities results in their exclusion from opportunities for further personal, social and vocational development.

Target 6. Children and youth with disabilities will be an integral part of the population targeted by Development Goal 3 of the Millennium Declaration, which is to ensure that, by the year 2015, children everywhere, boys and girls alike, will be able to complete a full course of primary schooling.

Target 7. By 2010, at least 75 per cent of children and youth with disabilities will be able to complete a full course of primary schooling.

Both of these targets relate to Development goal 2 – Universal primary education - of the Millennium Declaration. Indicators of progress would correspond to those identified at the international level to facilitate international comparisons between the situation of children with disability and non-disabled children. However, a problem is that the Millennium Declaration does not address the situation of persons with disabilities, so disability disaggregated data on the variables associated with Development goal 2 are limited at best. In the light of the critical role of education and literacy in advancement of persons with disabilities, this is an area for urgent statistical development.

Indicators for monitoring progress on Development goal 2:[47]

• Net enrollment ratio in primary education

The indicator is calculated as the number of enrolled children in the primary-level school cohort according to school records as reported by education ministries or similar bodies and divided by the population of primary school age.

Data on primary-level enrollees per 100 children of enrollment age normally are collected by the ministry of education or similar body or by means of sample surveys or national censuses. Revision 1 of the Principles and Recommendations for Population and Housing Censuses did recommend that data on primary education and on educational attainment be collected for persons with disability, ages 5 to 29 in the year 2000 round of Population and Housing Censuses, but availability of such data remain limited.

Data on primary-level enrollees for purposes of international comparisons are compiled by the UNESCO Institute for Statistics < http://www.uis.unesco.org/>, which bases its compilations on data reported by national educational ministries or national statistical services and population estimates produced by the United Nations Secretariat (Population Division).

For Governments that do not collect disability disaggregated primary education data in the national census or in connection with the registry of primary-level enrollees, consideration should be given to pilot household surveys to assess the size and characteristics of primary-level school populations with disability.

• Proportion of pupils starting grade 1 who reach grade 5 [proportion who complete primary education]

The indicator is calculated by dividing the total number of pupils in a school cohort who reach each successive grade of the specified level of education by the number of pupils in the school cohort.

Date for calculating the indicator, as proposed by the UNESCO Institute for Statistics, is based on grade-specific enrollment data for two successive years for a country and on grade-repeater data (those who repeat a grade for two consecutive years).

Disability disaggregated data on completion of primary education may be available from registry data or household surveys for Governments which are not yet in a position to implement the disability characteristics data collection recommendations for national population and housing censuses.

• Literacy rate of 15-24 year olds

The indicator is calculated by dividing the population ages 15-24 that are literate by the entire 15-24 cohort.

Literacy data are available from national censuses and household surveys. However, Revision 1 of the Principles and Recommendations for Population and Housing Censuses did not include literacy among its recommended tabulations of disability characteristics.

For purposes of monitoring progress on this BMF targets, consideration may be given to post-census sample enumerations or in connection with household surveys.

Target 8. By 2012, all infants and young children (birth to four years old) will have access to and receive community-based early intervention services, which ensure survival, with support and training for their families.

Progress on target 8 is related to Development goal 4 – Reduce child mortality – of the Millennium Declaration.

Indicators for progress on Development goal 4:[48]

• Under-five mortality ratio

Age-specific mortality rates are calculated from birth and death data from vital statistics registries, censuses and household surveys, with the principal data source being the vital statistics registry system. Death data on infants and young children with a disability would likely more be available from household surveys.

The indicator is a measure of child survival and reflects on overall social and economic conditions. Collection of data on under-five mortality on children with disability would provide insights on the extent to which they obtain they have access to and are able to use services essential to their well-being.

Reducing under-five child mortality among infants and young children with disability during the renewed Asian and Pacific Decade of Persons with Disabilities, 2003-2012 will contribute to improved well-being for all.

• Infant mortality ratio

Infant mortality is defined by number of infants dying before reaching the age of one year. It is calculated on the basis of 1000 live per year from vital statistics registries. It can be a controversial statistic when calculated with respect to infants with disability; disability disaggregated data would most likely come from household surveys.

• Proportion of 1 year olds immunized against measles

Immunization rates indicate the extent to which essential detection and related services are available to all infants and young children. Immunization is important to improved child survival.

Data may come from the national ministry that is responsible for outreach and immunization services in connection with the Expanded Programme on Immunization of the World Health Organization, and from household surveys. The later most likely would be the source of disability-disaggregated data on immunizations.

Another factor that is important to child survival is access to clean water and basic sanitation, which is covered in Development goal 7 – Ensure environmental sustainability – of the Millennium Declaration.

Development goal 7 includes a target (10) that aims to halve by 2015 the proportion of people without sustainable access to safe drinking water and basic sanitation.[49]

• Safe water

Unsafe water is a direct cause for disease; progress in providing improved drinking water sources will result in improved health status for all.

Data on access to safe water normally is collected in the national census; household surveys may be the principal – and most reliable - source of data on access to water by households with a member with disability. It is important that survey data cover both rural and urban areas.

• Improved sanitation

Data on facilities to separate human wastes hygienically from contact with people and animals provide insights to the nature, extent level of maintenance of civil infrastructure that contributes to improved well-being in the population by reducing sources of possible disease and contamination. Household survey data may be the principal – and most reliable - source of infrastructure coverage to households with a member with a disability.

Target 9. Governments are urged to ensure detection of disabilities at as early an age as possible.

The basic indicator for target 9 would be "yes / no" early detection services exist and are available to all; if not to all areas, then an explanation of strategies to ensure that early detection services extend to all.

Sub-indicators on targets 6 to 9 deal with both policy and institutional variables as well as selected outcomes.

(d) Training and employment, including self-employment. Persons with disabilities have a right to decent work. However, they remain disproportionately undereducated, untrained, unemployed, underemployed and poor, and they have insufficient access to the mainstream labour markets, due to social exclusion and a lack of trained and competent staff who work with persons with disabilities with regard to training and employment.

Target 10. By 2012, at least 30 per cent of the signatories (member States) will ratify ILO Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159) 1983.

Progress on this target is most easily achieved by monitoring the "International Labour Standards" (ILOLEX) <http://www.ilo.org/ilolex/> database of the International Labour Organization concerning ratification/accession to ILO C159 during the renewed Asian and Pacific Decade of Persons with Disabilities, 2003-2012.

Target 11. By 2012, at least 30 per cent of all vocational training programmes in signatory countries [to ILO C159] will be inclusive of persons with disabilities and provide appropriate support and job placement or business development services for them.

The basic indicator for target 11 would be "yes / no" vocational services exist, are inclusive and provide ancillary counseling and job placement or business development services, as appropriate.

Sub-indicators on target 11 focus on policy and institutional variables as well as selected outcomes.

Target 12. By 2010, reliable data on the employment and self-employment rates of persons with disabilities will exist in all countries.

Indicators on the target will be developed in connection target 11, which includes sub-indicators on employment promotion among persons with disabilities.

(e) Access to built environments and public transport. Inaccessibility to built environments, including public transport systems, is a major barrier to full and effective participation of persons with disabilities in social life and development in countries. However, inaccessible built environments and public transport systems discriminate against all members of society. The situation will exacerbate as populations in the region age. Universal, inclusive design approaches benefit not only persons with disabilities but most all sectors of society, which can include older persons, pregnant women, and parents with young children.

Accessibility in the built environment is covered in Draft Article 19 of the new international convention on the rights of persons with disabilities.[50]

Target 13. Governments, which have not already done so, are urged to adopt and enforce accessibility standards for planning of public facilities, infrastructure and transport, including those in rural and agricultural contexts.

Target 14. As soon as practicable, existing land, water and air public transport systems (vehicle stops and terminals) should be made accessible; and all new and renovated public transport systems, including road, water, light and heavy mass railway and air transport systems should be made fully accessible for persons with disabilities.

The basic indicator for targets 13 and 14 would be "yes / no" environmental accessibility standards or building codes or both have been adopted and procedures are in place, subject to available resources, for retrofitting public buildings, facilities and transportation systems for accessibility.

Sub-indicators on targets 13 and 14 focus on policy and institutional variables.