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UN Programme on Disability   Working for full participation and equality

2001 Observance of the
International Day of Disabled Persons

International Day of Disabled Persons 3 December 2001

United Nations expert group meeting on disability-sensitive policy and programme monitoring and evaluation
UNHQ, New York, 3-5 December 2001

DISCUSSION PAPER

DRAFT: "Measuring Progress Towards the Implementation of the World Programme of Action Concerning Disabled Persons"

Introduction

The World Programme of Action Concerning Disabled Persons offers a clear paradigm for the role of monitoring, disability indicators and disability statistics in programme implantation. In this paradigm, disability indicators and statistics are viewed not as ends unto themselves, but as mechanisms to determine whether the goals of the Programme are being achieved. The Programme states, "It is essential that assessment of the situation relating to disabled persons should be carried out periodically and that a baseline should be established to measure developments. The most important criteria for evaluating the World Programme of Action are suggested by the theme of the International Year of Disabled Persons, 'Full participation and equality'. Monitoring and evaluation should be carried out at periodic intervals at the international and regional levels, as well as at the national level. Evaluation indicators should be selected by the United Nations Department of International Economic and Social Affairs in consultation with Member States and relevant United Nations agencies and other organizations."1/

In such a paradigm, monitoring, data and indicators each play a unique role. Monitoring refers to the practice of setting goals and objectives and then establishing evaluation criteria to determine whether the goals and objectives have been achieved.2/ In order to monitor, countries need to gather data periodically based on those evaluation criteria which will provide measures of those evaluation criteria. Indicators are those data elements that are believed to provide the best measures of progress.3/

The goal of this paper is to suggest specific protocols for monitoring progress towards the World Programme of Action. Basic critical elements for establishment of a monitoring programme by member States will be proposed. These elements include:

  1. Establishment of specific goals related to equalization of opportunity for persons with disabilities;
  2. Assessment of the current situation for persons with disabilities as compared to all persons and identify indicators;
  3. Identify a population to represent persons with disabilities;
  4. Identify other populations at risk for disadvantage;
  5. Set benchmarks for indicators to measure progress towards objectives and creation of a programme of periodic review and appraisal.

In making these recommendations, the goal of achieving a complete and comprehensive evaluation of the complete situation of persons with disabilities is not primary. Rather, the emphasis is on what is achievable, given that most member States are just beginning to engage in this endeavor. Thus, the product should be viewed as a suggested first step towards achieving a comprehensive monitoring programme, rather than a comprehensive programme in itself. However, these recommendations should be viewed as flexible, with entities being free to add aspects to the programme as they see fit.

The paper does recognize future needs to go beyond just a basic programme. Of particular concern is being able to monitor, not only progress towards goals and objectives but to be able to explain why such progress or lack thereof was made. To this end, being able to measure accessibility is important and the paper will conclude with a discussion related to accessibility issues important for future monitoring activities.

Historical Background

In planning its coordination activities shortly after passage of the Programme, the Department's Centre for Social Development and Humanitarian Affairs, now the Division for Social Policy and Development, focused on the importance of quality statistics for monitoring equalization of opportunity. In 1984, the Centre convened an Expert Group on the development of statistics for disabled persons, which concluded... "Operationalization of the concepts, definitions and instruments of observations should not be dominated by health aspects alone. Indicators must focus on equalization of opportunity and handicapping facets of the environment. Indicators should be developed that identified barriers and the means of eliminating them. The situation of disabled persons should be measured over time and compared with that of others who were not disabled."4/ In terms of monitoring, the experts recommended that a study be prepared on the selection and compilation of indicators for monitoring the World Programme of Action.5/ Statistics would be compiled for the monitoring progress towards the Programme.

By 1993, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities established Rule 20, National monitoring and evaluation of disability programmes in the implementation of the Rules.6/ It notes that "States are responsible for the continuous monitoring and evaluation of the implementation of national programmes and services concerning the equalization of opportunities for persons with disabilities." By the time of the Third Review and Appraisal of the World Programme of Action, the establishment of a concrete set of indicators to compare the situation of persons with and without disabilities was now recognized to be of critical importance if States were to successfully implement Rule 20.

In recognition of this and other issues, shortly after establishment of the Standard Rules, at its twenty-eighth session, the Statistical Commission requested that the United Nations Statistics Division prepare a minimum set of tabulation items and core tables on disability issues for consideration by an expert group on the 2000 World Population and Housing Census Programme.7/ In response, the Division issued several recommendations for the year 2000 round of censuses. These recommendations were adopted by the Expert Group in a New York meeting in September 1996.8/

Implementation of the World Programme of Action Concerning Disabled Persons: Towards a Society for all in the Twenty-first Century

General Assembly resolution 54/121 paragraph 10 urges Governments to cooperate with the Statistics Division of the Secretariat in the continued development of global statistics and indicators.9/ The United Nations Statistics Division's work towards the improvement of disability statistics has focused on three objectives: (i) improvement of concepts and methods, (ii) technical cooperation to improve and promote national capabilities, and (iii) more effective compilation and dissemination of data.

A substantive accomplishment of the Statistics Division was the completion of the Guidelines and Principles for the Development of Disability Statistics. This publication is oriented to national statisticians to assist them in responding to the growing demand for data on disability. It addresses special issues raised by collecting and compiling statistics on persons with disabilities in national censuses and surveys, and in their analysis and dissemination for policy purposes. The expected publication date is later this year. 10/

The Statistics Division organized and hosted the International Seminar on the Measurement of Disability in collaboration with the United Nations Children's Fund (UNICEF), the Statistical Office of the European Communities (Eurostat), and the Centers for Disease Control and Prevention (CDC) of the United States of America.11/ The seminar brought together close to 100 participants from all regions of the world. Participants included experts in disability measurement from government and research institutions, representatives of the disability community and policy makers.

The objectives of the meeting were: to review and assess the current status of methods used in population-based data collection activities to measure disability in national statistical systems, with particular attention to questionnaire design; to develop recommendations and priorities to advance work on the measurement of disability; and to contribute to building a network of institutions and experts, including producers and users of disability statistics to implement the developments in this field. A publication will be issued as a report of the meeting. Activities to follow-up on the measurement issues identified in the seminar for further research and development are being planned.

In relation to training and technical cooperation with countries, the Statistics Division participated in the Sub-regional Workshop on Disability Statistics for the eastern Asian region in April 2001. The following six countries participated: China, Hong Kong (China), Indonesia, Macao (China), Mongolia, Philippines, Republic of Korea, and Singapore. The objectives of the workshop were to address the training needs of national statisticians with responsibility for producing disability statistics, and of government personnel who require such statistics for policy formulation. Another aim of the Workshop was to bring together the producers and users of disability data in countries and in the sub-region for effective dialogue and partnership in the production and utilization of disability data.

A workshop on disability statistics is planned for the African Region in September 2001. The objective of the Workshop is to strengthen national capabilities to produce, disseminate and use data on disability for policy development and implementation. The Workshop will bring together producers and users of disability statistics to promote understanding of data collection issues and to specify data required for policy formulation. It will also provide for the exchange of information and experiences of the participating countries and organizations, and introduce new concepts, methods, classifications and instruments used to measure disability. The United Nations Guidelines and Principles for the Development of Disability Statistics will provide an important training tool for the workshop.

With regard to data compilation and dissemination, the Statistics Division has published an internet based statistical reference and guide to the available statistics, specifically, on national sources of data, basic disability prevalence rates, and questions used to identify the population with disabilities.12/ Work continues to finalize the United Nations Disability Statistics Database (DISTAT-2). DISTAT is a global database including statistics, indicators and textual information from national data collected on disability issues.

In tandem with these statistical efforts, the United Nations Division for Social Policy and Development has engaged in development of concepts to help establish parameters for the monitoring process. To systematically address these parameters, from 13 to 17 December 1999, with support from the United Nations Division for Social Policy and Development, the Hong Kong Equal Opportunities Commission in cooperation with the Centre for Comparative and Public Law, Faculty of Law at the University of Hong Kong organized the Interregional Seminar and Symposium on International Norms and Standards Relating to Disability.13/ The objective of Cluster Three in this seminar was to review the manner in which disability is defined in a number of national and international laws, conventions and measurements. The other two clusters made great strides in determining appropriate legal mechanisms for implementation of the Programme and advances in technology to facilitate implantation.

With much of the conceptual and statistical work complete, the time is right to propose a basic plan to monitor the World Programme of Action. In such a plan, the three components are the population to be assessed in terms of equalization of opportunity, subpopulations within that population and the variables that are to comprise the determination of outcomes. This requires a basic model for monitoring.

Establishment of Specific Goals

The establishment of specific goals related to equalization of opportunity for persons with disabilities by a member State combines both philosophical considerations and practical limitations. The World Programme of Action stresses nine different areas for equalization, as follows::14/

  1. Legislation should be enacted to eliminate discriminatory practices, to pay attention to specific rights and to address specific conditions which adversely affect the abilities of persons to exercise their rights,
  2. The physical environment should be designed or altered to become accessible to all as a matter of policy, including rural areas,
  3. Income maintenance and social security programmes should be equally available to persons with disabilities, with easily accessible arrangements for appeals,
  4. Education and training opportunities should take place as in the general educational system for both children and adults wherever possible, with enhanced flexibility, the involvement of parents and with the following characteristics:
    a) individualized,
    b) locally accessible,
    c) comprehensive and
    d) offering a range of choices,
  5. Employment opportunities should also take place in the general labour force system, with particular attention paid to rural employment, the provision of assistive devices related to work, the role of employers' and workers' organizations in developing a joint strategy, training opportunities and the role of the public sector,
  6. Recreational opportunities should be made accessible, including the systematic dissemination of information on accessibility,
  7. Cultural activities should be accessible, with special arrangements for persons with mental or sensory impairments,
  8. Religious activities should be accessible and
  9. Sports should be encouraged, through the provision of adequate facilities and the proper organization of these activities.

Legislation may be viewed as more a mechanism for the achievement of equal participation. The other eight areas correspond to the concept of target areas for equal participation provided in the Standard Rules as shown in Figure 1. The Programme areas are covered in the Rules' target areas as follows: a) physical environment - Rule 5 on accessibility, b) income maintenance and social security - Rule 8, c) education and training - Rule 6, d) employment - Rule 7, e) recreation - Rule 11, f) culture - Rule 10, g) religion - Rule 12 and h) sports - Rule 11 (with Recreation). Rule 9 on family life and personal integrity focuses on a target area not stressed in the original Programme.15/ Thus, the Rules provide a certain detail on the original target areas in the Programme.

Figure 1. SUMMARY OF THE TARGET AREAS FOR EQUAL PARTICIPATION FROM THE STANDARD RULES ON THE EQUALIZATION OF OPPORTUNITIES FOR PERSONS WITH DISABILITIES
 

Rule 5. Accessibility - States should recognize the overall importance of accessibility in the process of the equalization of opportunity in all spheres of society. For persons with disabilities of any kind, States should a) introduce programmes of action to make the physical environment accessible and b) undertake measures to provide access to information and communication.

Rule 6. Education - States should recognize the principle of equal primary, secondary and tertiary educational opportunities for children, youth and adults with disabilities, in integrated settings. They should ensure that education of persons with disabilities is an integral part of the educational system.

Rule 7. Employment - States should recognize the principle that persons with disabilities must be empowered to exercise their human rights, particularly in the field of employment. In both rural and urban areas they must have equal opportunities for productive and gainful employment in the labour market.

Rule 8. Income maintenance and social security - States are responsible for the provision of social security and income maintenance for persons with disabilities.

Rule 9. Family life and personal integrity - States should promote the full participation of persons with disabilities in family life. They should promote their right to personal integrity and ensure that laws do not discriminate against persons with disabilities with respect to sexual relationships, marriage and parenthood.

Rule 10. Culture - States will ensure that persons with disabilities are integrated into and can participate in cultural activities on an equal basis.

Rule 11. Recreation and sports - States will take measures to ensure that persons with disabilities have equal opportunities for recreation and sports.

Rule 12. Religion - States will encourage measures for equal participation by persons with disabilities in the religious life in their communities.

Source: United Nations General Assembly, The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (New York, United Nations A/48/96, 1993).

For example, Rule 6 on Education states that special attention should be given to: a) very young children with disabilities, b) pre-school children with disabilities and c) adults with disabilities, particularly women.16/ Stressing the need for accommodations in the mainstream, the Rules note that States should have clearly stated policies and allow for curriculum flexibility, addition and adaptation, as well as provide for quality materials, ongoing training and teacher support.17/ This detail thus provides a specific identification of constituencies to receive special attention, as well as guidelines on how to accommodate persons with disabilities in the educational mainstream.

Other Rules also set priorities to guide their implementation. For Rule 7 on employment, States' action programmes should include accessible workplace designs and adaptations, technology support, assistive device development and training. Rule 15 on legislation notes different mechanisms - exclusive disability legislation, inclusion of disability issues within other legislation and mentioning persons with disabilities in interpretations of existing legislation.

Although a target, Rule 5 on Accessibility may represent a first step towards achievement of other targets. Thus, in order to achieve goals in areas such as education and employment, the necessary prerequisite of accessibility must first be met. The concept of accessibility is a difficult concept to measure and will be discussed towards the end of this paper.

The issue of prioritization is important. If a member State is to establish goals for a particular area, it is recommended that disability indicators for that goal be established. Support for the comprehensive measurement of those indicators becomes necessary. Variables and indicators need to be selected and measured periodically. Such indicators should refer both to specific disability initiatives and to broader national initiatives that may impact on persons with disabilities. As with the monitoring activities, organizations of disabled persons should be actively involved in this process.

Indicators clearly need to be linked to short-term and medium-term targets, as well as to selected legal and policy instruments for equalization of opportunities. These desired linkages mean that programme administrative data should be considered as a tool for monitoring and should be linked to census and survey data. The specific trade-offs due to scarce resources need to be clearly addressed and resolved. This requires a clear identification of the kind of data that are being employed for indicators and the provision of clear information on their strengths and weaknesses.

With such a complex system required to determine progress towards goals, the first question that States must address is whether or not they will establish goals for all of the areas in the World Programme and the Standard Rules. If such goals are established, the next question is will progress towards every goal be monitored. While such steps would appear to be desirable, if resources are scarce, such actions may be impossible. Moreover, the commitment to engage in all such activities, without the appropriate follow-up measures might be quite discouraging to people with disabilities and their families.

A philosophical problem arises, because certain concepts may be easier to measure then others. Thus, the temptation to establish goals strictly on the basis of those items that are easily measured should be resisted. Member States must balance competing issues, such as the desire to be comprehensive with the scarcity of resources in such a way that the most important issues as monitored.

This paper recommends that, at a bare minimum, education and employment be selected for the establishment of concrete goals for persons with disabilities. In the World Programme of Action, education and employment were two issues highlighted for evaluation, with conclusions drawn that opportunities were not equal in these areas but that equalization was definitely feasible.18/ Moreover, UNESCO and ILO have already established systems to measure programmatic outputs in these areas. Finally, criteria for measurement of these two areas are relatively advanced, with data having been collected in many countries for several years. Thus, these two areas meet the criteria of being both important and feasible.

This recommendation should not be taken as a statement that other areas are unimportant. Member States should set goals and establish indicators for as many areas as possible. Rather, this recommendation should be taken to say that education and employment goals and indicators constitute the bare minimum variables that must be included in an effective monitoring programme.

Long-term goals may be quite comprehensive and constitute a philosophical approach. In that sense, comprehensive goals that state that education and employment shall be equal for all persons regardless of disability status may be appropriate. The monitoring programme can then be viewed as a long-term process for achievement of such ambitious goals.

Assessment of the Current Situation and Identification of Indicators

If education and employment are to be equal for all persons, a country must first determine what is the current state of equality. Do persons with disabilities have equal education and employment as those without disabilities. This means there must be particular measures to examine such disparities. Many countries already measure these concepts in censuses and surveys.

The United Nations has proposed indicators for sustainable development for all persons.19/ Within these set of indicators, some have been determined to be "Driving Force Indicators," meaning changes in these indicators could provide the force to drive sustainable development. Many of these indicators, relevant for education and employment, could be applied to compare the situation for persons with disabilities to all persons in the population. These would have the advantage then of applying indicators that are already being employed. Thus, without engaging in a wide-ranging technical discussion of statistical derivation, four of these indicators are proposed here to do so.

In terms of combating poverty, the unemployment rate is considered to be a driving force indicator.20/ "Unemployment is useful and relevant to measuring sustainable development, especially if uniformly measured over time, and considered with other socioeconomic indicators. It is one of the main reasons for poverty in rich and medium income countries and among persons with high education in low income countries...This indicator is linked to other socioeconomic indicators such as poverty measures and adult literacy...National targets for unemployment are common." The indicator is calculated by dividing the total of unemployed persons by the sum total of unemployed and employed persons in that group and can be calculated as recommended by the United Nations and the International Labour Organization.21/

The United Nations has also recommended a related labour force indicator of women per 100 men in the labour force. "A small women's share, assuming properly designed surveys, indicates non access to education and inequality of opportunity and treatment from, for examples, national laws or general societal practices. Such situations are usually accepted as unsustainable."22/ This indicator may not be practical for persons with disabilities, because the association of disability with gender might confound the variable, making it difficult to interpret. A good related indicator would be the labour force participation rate, by gender. This is calculated by dividing the sum total of unemployed and employed persons in a group by the total number of persons in that group. It can be calculated as recommended by the United Nations and International Labour Organization.23/

In terms of education, school enrollment ratios are considered to be a driving indicator for promoting education, public awareness and training.24/ "Education is a process by which human beings and societies reach their fullest potential. Education is critical for promoting sustainable development and improving the capacity of people to address their sustainable development concerns. While basic education provides the underpinnings for any environmental and development education, the latter needs to be incorporated as an essential element of learning. It is also critical for achieving awareness, values, skills and behavior consistent with sustainable development and for effective participation in decision making...Education is closely linked to other indicators reflecting basic needs, capacity building, information and science, and the role of the major groups." The indicator is calculated by dividing children enrolled in school by all children for a particular age group. It can be calculated for primary and secondary school, with gross and net measures, as recommended by the United Nations and the United Nations Educational, Scientific and Cultural Organization.25/

Educational variables should also be measured for adults as well. As with school enrollment, the United Nations considers the adult literacy rate to be a driving indicator. "Literacy is critical for promoting and communicating sustainable development and improving the capacity of people to address environment and development issues. It facilitates the achievement of environmental and ethical awareness, values and skills consistent with sustainable development and effective public participation in decision making."26/ It is calculated by the proportion of the population aged 15 years and over which is literate, as recommended by the United Nations and the United Nations Educational, Scientific and Cultural Organization.27/ Where literacy is widespread, some countries may wish to substitute educational attainment for this indicator.28/

Thus, these four measures are recommended to compare the situation of persons with disabilities with other persons. Such a schematic might be viewed as follows:

Variable All Persons Persons with Disabilities
Education:
School Enrollment Ratio
Adult Literacy Rate
Employment:
Unemployment Rate
Labour Force Participation Rate

Assessments of the current situation may also rely on qualitative measures as well. Testimonies and on-site visitations may provide a depth of information that statistics in themselves may not provide. Thus, quantitative measures may be important, but they should not be viewed as the sole source of information. But, the above schematic might represent the first step towards assessing these variables as a monitoring programme is set to begin for persons with disabilities. The current situation can be assessed in relation to these indicators and then they can be tracked over time.

Identifying a Population

Compared to establishing indicators for education and employment, identifying a population to represent persons with disabilities is an extremely difficult task. For instance, after noting a number of disability definitions, Cluster Three at the Hong Kong Interregional Seminar and Symposium on International Norms and Standards Relating to Disability determined that how disability is defined in national and international laws, policies and measurement tools suggests the legal, social, political and economic consequences of such definitions. The Cluster determined that definitions include biological/medical, functional/rehabilitation, environmental and human rights models.29/

After considering the wide scope and uses for these definitions, Cluster Three recommended that given that the appropriate public policy goal is protecting human rights, promoting equalization of opportunity or assuring equity of results, an environmental or human rights definition should be considered, when it is necessary to define disability. Further, the United Nations should provide technical assistance in the development of definitions consistent with the principles of universal design.30/ In this case, the population with disabilities becomes consistent with that offered by Disabled Persons International: "Disability is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers."31/

At this point in time, these definitions have not been adopted, but they clearly have played a role in challenging more traditional definitions. For instance, at the times of their passage, although neither instrument officially adopted it, both the World Programme of Action and the Standard Rules recognized the World Health Organization's definition of disability as, "any restriction or lack (resulting from an impairment) of ability to perform an activity in a manner or within the range considered normal for a human being."32/ The Standard Rules note that the term "...summarizes a great number of differential functional limitations occurring in any population in any country in the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions, or mental illness."33/ However, the passage of the new International Classification of Functioning, Disability and Health marks a dramatic departure from the attempt to define disability at a particular level.34/ In fact, functioning and disability are comprise of both a body functions/structures component and an activities/participation component. The new classification does not isolate disability as a stand-alone concept and define it. This is in keeping with the flexible approach urged at the Hong Kong seminar.

These changes, while promising, do leave a particular question as it relates to disability statistics - how a population representing persons with disabilities is to be defined and measured for purposes of monitoring. For instance, if progress towards education and employment goals is to be measured, a population that is deemed representative of persons with disabilities would be important to accomplishing this goal must be identified. Because only after such a population is identified in data sources can indicators comparing persons with and without disabilities be assessed. For instance, to compare unemployment rates between people with and without disabilities in a census or a survey, a population must be identified to delineate the difference.

One approach to solving this dilemma is to not view the population identified as either the "disabled population" or the "population with disabilities," but rather as a cluster that is at risk for denial of equalization of opportunity. In this sense, such a population would be a "Disability-Risk Population" or a "Population At Risk for Disability." Such an approach would remove the issue of "Who is Disabled?" from identifying the population, but still allow for acceptance of the Statistics Division's recommendations for the year 2000 round of censuses.35/ The Secretary-General has already endorsed the recommendations, specifically endorsing a Disability approach, rather than one focusing on Impairments or Handicaps, as it related to the World Health Organization's International Classification of Impairments, Disabilities and Handicaps.36/ Thus, for the first time, disability was included as a topic in the revision of the Principles and Recommendations for Population and Housing Censuses.37/ The following broadly defined categories were recommended - seeing, hearing, speaking (talking), moving, body movement, gripping/holding, learning, behaviour and personal care.

Thus, data can be collected on the populations with concerns in each of these areas. Then, education, employment and other results can be assessed for populations in each of these categories or for a population with any of these issues and compared for those without such issues. At the same time, as different concerns are raised, questions may change, without the pressure of having to statistically represent a "true" population. By so doing, progress towards equalization of opportunity can be addressed without having to label the population.

Other Populations

Just as identifying a population related to disability is critical to assess progress towards specific target areas will be assessed, other vulnerable populations are also of great concern. As the United Nations has noted, "In deciding which social groups merit monitoring in regards to the disadvantages suffered by particular groups of people, each country should determine which groups in it need special attention. Some of the common factors leading to social disadvantage are gender, age, physical or mental impairment, race, creed and so forth. The dissadvantaged are not necessarily small in number -- they may constitute the majority of the population."38/

Not only are these groups of concern in themselves, but also for those who have disabilities. In its thirty-eighth session, the Economic Commission urged that governments, intergovernmental organizations and non-governmental organizations place special emphasis on "...the human rights of persons with disabilities, children with disabilities and their families, gender aspects, in particular the issue of discrimination of girls and women with disabilities, and the situation of persons with developmental and psychiatric disabilities, with a focus on integrating such persons into society."39/

Aside from disability, the United Nations has recommended isolation of statistics on gender, children and youth and the elderly.40/ However, the above-recommended indicators may not be applicable to the elderly. The school enrollment ratio applies mainly to children in the school ages and the adult literacy, unemployment and labor force participation rates apply mainly to adults. Still, where feasible, age and sex breakdowns are recommended. For example, school enrollment ratios can be applied to compare disability-risk boys and girls with total boys and girls. If persons with disabilities live disproportionately in either rural or urban areas, urban-rural breakdowns may be desirable.41/ These cuts, however, tend to be demographic in nature and may not capture disadvantage.

For instance, a previous report in which the Secretary-General argued that development and growth appears to be intricately related to the advancement of women, noting that the poverty/gender association may be quite unique.42/ "One approach to understanding poverty from a gender perspective is based on the concepts of entitlements and endowments. An entitlement is a right to command resources. An endowment consists of the skills, access and other resources that make it possible to exercise an entitlement. In that sense, poverty is a failure to ensure entitlements because of inadequate endowments. In gender terms, this can be seen in terms of asymmetries between women and men in their entitlements and endowments."43/

Such asymmetries could very well be present between the population chosen to represent persons with disabilities and other populations. If so, if a country has measures for poverty status, examining these characteristics for people in terms of their disability status and results in education and employment could be quite illuminating. Thus, poverty breakdowns, alongside gender, age and urban-rural breakdowns is also recommended.

Setting Benchmarks

The process of setting benchmarks for indicators to measure progress towards objectives balances desired goals against realistic expectations. For instance, most countries might wish to be able to assert that within five years, disability status would make no difference in the unemployment rates. While this is a laudable goal, setting it and holding oneself accountable for it has ramifications.

For instance, when a set objective is not reached, it behooves policy makers and administrators to discern why the objective was not reached. If it is determined that achieving the objective was impossible, disillusionment can take place. The establishment of such objectives may be viewed as no more than an empty political exercise. This can then undermine support for the very programs designed to achieve such objectives.

Conversely, a strong temptation may exist to set objectives that could be reached if current trends were allowed to continue. While perhaps politically feasible, such a process undermines the proactive nature of the delivery of high quality services. Such policies may serve well in the short run, but may undermine long-term achievement of objectives, because the fundamental steps to alter development structures are not taking place.

Thus, a balance must be set between setting objectives that are impossible and those that will take place with little or no effort. For instance, if a population is chosen to represent persons with disabilities and that population has an unemployment rate of 80% and those without disabilities enjoy a rate of 5%, equality in five years is not feasible. Likewise, if unemployment rates have dropped from 80% to 70% in the last five years for people with disabilities, an objectives that sets the next five year goal at 65% would be selling the effort short.

Thus, countries need to look at previous trends and challenge themselves. They must consider the overall unemploymen5t situation in the country as well. With this flexibility in mind, certain critical elements must take place:

  • The current distinction between the population representing persons with disabilities and those without by the objective must be clearly elaborated. For instance, if unemployed is examined, a clear statement would be "currently, there is a fifty percentage point gap between persons with and without disabilities, with respective unemployment rates at 75% and 25%."
  • Then, an objective for the indicator within a set time period must be clearly elaborated. For example, "Within five years, this gap will be closed by ten percentage points and we expect the respective rates to stand at 64% and 24%. Note that for the gap to close to forty percentage points, the unemployment rate for persons with disabilities must improve by eleven percentage points, because the rate for others is improving by one percentage point.
  • Respective benchmarks or targets need to be established for chosen categories -functional status, gender, age, urban-rural residence and poverty status.
  • A clear statement of strategies or activities designed to meet the objectives must be elaborated; for if goals are set, but there are no strategies to achieve them, the targets will not likely be met.
  • A clear plan for monitoring interim benchmarks should be noted. For instance, indicators might be measured every year if possible. In poorer countries, this will be difficult and censuses may have to be employed.
  • Finally, a clear commitment to review and appraise the measured results at the end of the target period must be stated. Such a review must evaluate not only the progress, but discern why certain strategies were successful and others were not.

Considerations for Evaluation of Accessibility

Thus far, the discussion has been concerned with measuring progress towards goals and objectives for specific populations. Of great concern is explaining why progress was achieved or not. Information on such explanations can also be obtained through data gathering efforts. Of critical importance is to be able to measure the concept of accessibility, the necessary condition to achieve goals and objectives. The General Assembly in the Twenty-first Century

General Assembly resolution 54/121 paragraph 4 encourages Governments, non-governmental organizations and the private sector to take concrete measures to promote further equalization of opportunities by focusing on accessibility.44/

Thus, at some point, measures of Accessibility, Rule 5 of the Standard Rules, must become a key focus. The Third Review and Appraisal noted that "...measures of whether persons with disabilities are empowered to take independent decisions in their lives, to exercise control over their use of time, to plan and decide on use of economic resources and to prepare for major life cycle changes represent the types of indicators that can predict whether desired outcomes are being achieved.45/ The Secretary-General has noted that "...independence, use of time, social integration and economic self-sufficiency have proved beneficial in identifying the areas of involvement that the World Programme of Action must foster."46/ However, "...the areas of life where the environment can hinder equalization of opportunity, such as independence, use of time, social integration, economic self-sufficiency and life-cycle transitions, also have not been systematically measured."47/

The International Classification of Functioning, Disability and Health marks a significant contribution by proposing a Classification of the Environment. The Handicap Classification does not appear, indicating that accessibility concepts require further development.48/ To this end, the United Nations Division for Social Policy and Development will support implementation of the environmental classification and continue its work in the area of providing indicators for accessibility.49/

Summary and Conclusions

To briefly review, the following recommendations have been made in this report.

  1. Based on the Standard Rules, countries should establish specific goals for persons with disabilities related to education and employment.
  2. At a minimum, four indicators should be endorsed. These are the school enrollment ratio and the adult literacy rate (or educational attainment) for education and the unemployment rate and the labour force participation rate by gender for employment.
  3. A population to represent disability concepts should be derived using the following broadly defined categories - seeing, hearing, speaking (talking), moving, body movement, gripping/holding, learning, behaviour and personal care.
  4. At a minimum, breakdowns by gender, age, urban-rural residence and poverty breakdowns should be discerned.
  5. Ambitious but realistic benchmarks must be established for the indicators.
  6. Countries need to explore measures for accessibility.

Because the last is difficult, focus should take place on the first five recommendations. The Secretary-General has noted that "...the success of certain data collection efforts under conditions in which resource are scarce suggests the wisdom of setting clear priorities in any data collection effort."50/ Thus, countries need to establish their priorities.

Through its technical assistance programs, the United Nations Division for Social Policy and Development continues to address the issue of resource constraints. Support of the Hong Kong symposium in 1999 and the Panama summit on children in 2000 are two examples of this support. Planned support for future meetings form a comprehensive programme on the part of the Division to further the development of disability statistics and indicators. These issues will be further elaborated in the Fourth Review and Appraisal of the World Programme of Action Concerning Disabled Persons.


Notes

1/ United Nations General Assembly, World Programme of Action Concerning Disabled Persons (New York, United Nations A/37/51, 1983), p. 47, paragraph 194.

2/ United Nations Department for Economic and Social Affairs, Division for Social Policy and Development, Programme on Disability, Disabled Persons Bulletin (New York, United Nations Number 2, 1999), p. 7.

3/ ibid.

4/ United Nations Secretariat, Department of International Economic and Social Affairs Statistical Office and Centre for Social Development and Humanitarian Affairs, Report of the Expert Group on Development of Statistics on Disabled Persons (New York, United Nations ESA/STAT/AC.18/7, 1984), p. 5.

5/ United Nations Secretariat, Department of International Economic and Social Affairs Statistical Office and Centre for Social Development and Humanitarian Affairs, Report of the Expert Group on Development of Statistics on Disabled Persons (New York, United Nations ESA/STAT/AC.18/7, 1984), p. 23.

6/ United Nations General Assembly, The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (New York, United Nations A/48/96, 1993), Rule 20, p. 36.

7/ United Nations Statistical Commission, Report on the Twenty-Eighth Session (27 February-3 March 1995) (New York, United Nations Economic and Social Council E/1995/28, 1995), paragraph 56.

8/ United Nations Secretariat, Department for Economic and Social Information and Policy Analysis Statistics Division, Part Two: Topics and Tabulation for Population Censuses (New York, United Nations ST/ESA/STAT/AC/51/2, 1996), pp. 2-42 - 2-45, paragraphs DC.1-DC.20; United Nations Department of Economic and Social Affairs Statistics Division, Principles and Recommendations for Population and Housing Censuses, Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), pp. 93-95, paragraphs 2.262-2.277.

9/ United Nations General Assembly, Implementation of the World Programme of Action Concerning Disabled Persons: Towards a Society for All in the Twenty-First Century (New York, United Nations A/54/121, 2000), p. 3, paragraph 10.

10/ Guidelines and Principles for the Development of Disability Statistics, Department of Economic and Social Affairs, Statistics Division, Statistics on Special Population Groups Series Y No. ST/ESA/STAT/SER.Y/. United Nations, New York, 1999.

11/ Background information and documents presented are available at on the Internet site of the United Nations Statistics Division at: http://www.un.org/Depts/unsd/disability/methods/index.html .

12/ The Internet-based resources page is located at http://www.un.org/Depts/unsd/ .

13/ The Internet-based resources page for the seminar and symposium is located at http://www.worldenable.net/hongkong99/default.htm .

14/ United Nations General Assembly, World Programme of Action Concerning Disabled Persons (New York, United Nations A/37/51, 1983), pp. 30-34, paragraphs 108-137.

15/ The Special Rapporteur of the Commission for Social Development on monitoring the implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities has also urged the addition of a Rule on housing and shelter. See United Nations General Assembly, Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities: Note by the Secretary-General (New York, United Nations A/52/56, 1996), p. 33.

16/ United Nations General Assembly, The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (New York, United Nations A/48/96, 1993), p. 24.

17/ United Nations General Assembly, The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (New York, United Nations A/48/96, 1993), p. 24.

18/ United Nations General Assembly, World Programme of Action Concerning Disabled Persons (New York, United Nations A/37/51, 1983), pp. 17-20, paragraphs 64-70..

19/ United Nations Commission on Sustainable Development, Indicators for Sustainable Development, Framework and Methodologies (New York, United Nations, 1996).

20/ United Nations Commission on Sustainable Development, Indicators for Sustainable Development, Framework and Methodologies (New York, United Nations, 1996), p. 3.

21/ United Nations Commission on Sustainable Development, Indicators for Sustainable Development, Framework and Methodologies (New York, United Nations, 1996), pp. 3-8; United Nations Department of Economic and Social Affairs Statistics Division, Principles and Recommendations for Population and Housing Censuses, Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), pp. 82-83, paragraphs 2.194-2.200; International Labour Organization, Surveys of Economically Active Population, Employment, Unemployment and Underemployment - An ILO Manual on Concepts and Methods (Geneva, International Labour Office, 1992).

22/ United Nations Commission on Sustainable Development, Indicators for Sustainable Development, Framework and Methodologies (New York, United Nations, 1996), p. 76.

23/ United Nations Department of Economic and Social Affairs Statistics Division, Principles and Recommendations for Population and Housing Censuses, Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), pp. 81-83, paragraphs 2.180-2.200; International Labour Organization, Surveys of Economically Active Population, Employment, Unemployment and Underemployment - An ILO Manual on Concepts and Methods (Geneva, International Labour Office, 1992).

24/ United Nations Commission on Sustainable Development, Indicators for Sustainable Development, Framework and Methodologies (New York, United Nations, 1996), pp. 47-48, 51-52, 55-56 and 59-60.

25/ United Nations Commission on Sustainable Development, Indicators for Sustainable Development, Framework and Methodologies (New York, United Nations, 1996), pp. 47-62; United Nations Department of Economic and Social Affairs Statistics Division, Principles and Recommendations for Population and Housing Censuses, Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), p. 76, paragraphs 2.140-2.152; United Nations Educational, Scientific and Cultural Organization, International Standard Classification of Education (Paris, United Nations Educational, Scientific and Cultural Organization, 1997) and Statistical Yearbook (Paris, United Nations Educational, Scientific and Cultural Organization, Annual Editions). See annex II of document 29C/20 of the twenty-ninth session of the general conference of the United Nations Educational, Scientific and Cultural Organization (8 August 1997).

26/ United Nations Commission on Sustainable Development, Indicators for Sustainable Developmeny, Framework and Methodologies (New York, United Nations, 1996), p. 63.

27/ United Nations Commission on Sustainable Development, Indicators for Sustainable Developmeny, Framework and Methodologies (New York, United Nations, 1996), pp. 63-65; United Nations Department of Economic and Social Affairs Statistics Division, Principles and Recommendations for Population and Housing Censuses, Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), p. 76, paragraphs 2.145-2.149; United Nations Educational, Scientific and Cultural OrganizationInternational Labour Organization, International Standard Classification of Education (Paris, United Nations Educational, Scientific and Cultural Organization, 1997) and Statistical Yearbook (Paris, United Nations Educational, Scientific and Cultural Organization, Annual Editions). See annex II of document 29C/20 of the twenty-ninth session of the general conference of the United Nations Educational, Scientific and Cultural Organization (8 August 1997).

28/ United Nations Department of Economic and Social Affairs Statistics Division, Principles and Recommendations for Population and Housing Censuses, Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), pp. 76-77, paragraphs 2.153-2.157.

29/ For a conceptualization of these divisions, see Rioux, Marcia H., "Disability: The Place of Judgement in a World of Fact," Journal of Intellectual Disability Research, Volume 41, Number 2, pp. 102-111.

30/ For a discussion of the role of universal design in disability policy, see United Nations General Assembly, Review and Appraisal of the World Programme of Action Concerning Disabled Persons: Report of the Secretary-General (New York, United Nations A/52/351, 1997), p. 4, paragraph 6.

31/ Disabled Persons International, Proceedings of the First World Congress (Singapore, Author).

32/ World Health Organization, International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease (Geneva, World Health Organization ISBN 92 4 154126 1, 1980), p. 143 and United Nations General Assembly, World Programme of Action Concerning Disabled Persons (New York, United Nations A/37/51, 1983), p. 3, paragraph 6.

33/ United Nations General Assembly, The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (New York, United Nations A/48/96, 1993), p. 9, paragraph 17.

34/ Information on the International Classification of Functioning, Disability and Health (ICF) can be obtained from internet at: http://www.who.int/icidh .

35/ These recommendations were adopted by the Expert Group in a New York meeting in September 1996. See United Nations Statistical Commission, Report on the Twenty-Ninth Session (11-14 February 1997), Supplement Number 4 (New York, United Nations Economic and Social Council E/1997/24 and E/CN.3/1997/29, 1997), paragraph 55.

36/ United Nations Statistical Commission, Demographic and Social Statistics: 2000 World Population and Housing Census Programme, Report of the Secretary-General (New York, United Nations Economic and Social Council E/CN.3/1997/14, 1996), p. 7, paragraph 29; World Health Organization, International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease (Geneva, World Health Organization ISBN 92 4 154126 1, 1980), pp. 141-180.

37/ United Nations Secretariat, Department of International Economic and Social Affairs, Principles and Recommendations for Population and Housing Censuses Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), pp. 93-94, paragraphs 2.262 to 2.272.

38/ United Nations Secretariat, Department of International Economic and Social Affairs, Principles and Recommendations for Population and Housing Censuses Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), p. 131, paragraph 3.59. For source document, see Note by the Secretary-General transmitting the report of the Expert Group on the Statistical Implications of Recent Major United Nations Conferences (E/CN.3/AC.1/1996/R.4) annex, paragraphs 68 and 69 (presented to the Working Group on International Statistical Programmes and Coordination at its eighteenth Session, New York, 16-19 April 1996).

39/ United Nations Economic and Social Council, Draft Resolution Submitted by the Vice-Chairman of the Commission for Further Promotion of Equalization of Opportunities by, for and with Persons with Disabilities (New York, United Nations E/CN.5/2000/L.6, 2000), p. 3, paragraph 4.

40/ United Nations Secretariat, Department of International Economic and Social Affairs, Principles and Recommendations for Population and Housing Censuses Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), pp. 131-133, paragraphs 3.62 to 3.79.

41/ United Nations Secretariat, Department of International Economic and Social Affairs, Principles and Recommendations for Population and Housing Censuses Revision 1 (New York, United Nations ST/ESA/STAT/SER.M/67/Rev.1, 1998), pp. 64-65, paragraphs 2.52 to 2.59.

42/ United Nations General Assembly, Sustainable Development and International Economic Cooperation - Advancement of Women, 1994 World Survey on the Role of Women in Development: Report of the Secretary-General (New York, United Nations A/49/378, 1994), p. 3.

43/ United Nations General Assembly, Sustainable Development and International Economic Cooperation - Advancement of Women, 1994 World Survey on the Role of Women in Development: Report of the Secretary-General (New York, United Nations A/49/378, 1994), p. 8.

44/ United Nations General Assembly, Implementation of the World Programme of Action Concerning Disabled Persons: Towards a Society for All in the Twenty-First Century (New York, United Nations A/54/121, 2000), p. 3, paragraph 4.

45/ United Nations General Assembly, Review and Appraisal of the World Programme of Action Concerning Disabled Persons: Report of the Secretary-General (New York, United Nations A/52/351, 1997), p. 11, paragraph 49.

46/ United Nations General Assembly, Review and Appraisal of the World Programme of Action Concerning Disabled Persons: Report of the Secretary-General (New York, United Nations A/52/351, 1997), p. 10, paragraph 41.

47/ United Nations General Assembly, Review and Appraisal of the World Programme of Action Concerning Disabled Persons: Report of the Secretary-General (New York, United Nations A/52/351, 1997), p. 11, paragraph 48.

48/ For a systematic appraisal of the dimensions of accessibility, see Brown, Scott Campbell, "Methodological Paradigms That Shape Disability Research," Chapter 5 in Gary L. Albrecht, Katherine D. Seelman and Michael Bury, editors, Handbook of Disability Studies (Thousand Oaks, Sage Publications, Inc., 2001), pp. 163-167.

49/ See United Nations website, Appendix A for a report on Accessibility.

50/ United Nations General Assembly, Review and Appraisal of the World Programme of Action Concerning Disabled Persons: Report of the Secretary-General (New York, United Nations A/52/351, 1997), p. 11, paragraph 48.

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