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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

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

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 anticipation of the Fourth Review and Appraisal of the World Programme of Action, the United Nations Department of Economic and Social Affairs, Division for Social Policy and Development determined that expert recommendations are required related to both disability-sensitive policy and programme evaluation and monitoring.  To further this end, the United Nations convened an Expert Group at its headquarters in New York, New York in the United States of America to assess the current situation, identify mechanisms to evaluate and monitor from a disability perspective the implementation of policies and programmes and establish concrete recommendations.

Participants in the meeting were convened as follows:

  • Dr. Denise Avard, Vice-Chair (Canada)
  • Mr. Julio Mantilla Arias (Ecuador)
  • Ato Abera Gebreselassie (Ethiopia)
  • Ms. Catherine Barral (France)
  • Mr. B. L. Sharma IAS (Retd.) (India)
  • Ms. Monica Bartley (Jamaica)
  • Mrs. Josephine M. Muriuki (Kenya)
  • Dr. Scott Campbell Brown, Chair (United States)
  • Ms. Debra Farmer, Rapporteur (United States)

Other participants included representatives from United Nations agencies and Dr. Donald Lollar (United States Centers for Disease Control and Prevention).

The following represents a report on the recommendations of the Expert Group..    Statements in bold represent recommendations where the Group agreed on the exact wording.  The rest of this report represent the report of the Chair on the Group's findings.  After consideration of historical factors underlying the Group's findings, this report turns to policy recommendations and then recommendations for monitoring and indicators.

The Expert Group noted that a comprehensive monitoring effort 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.  However, in making its recommendations, the Expert Group did not set a primary goal of achieving a complete and comprehensive evaluation of the complete situation of persons with disabilities.

Rather, the Expert Group placed emphasis is on what is achievable, given that most United Nations 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.

Historical Background Considered by the Expert Group

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."2/  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.3/    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.4/  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.5/  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 1996.6/

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.  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 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.7/    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.8/    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.9/  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 evaluate the World Programme of Action within the development context and to monitor progress towards completion of the Programme's goals.  This requires construction of a basic model to relate the disability perspective to development programmes and then consideration of the critical elements to assure equalization of opportunity in resource-scarce environments.  These actions form the policy recommendations and then recommendations for monitoring and indicators are addressed.

Recommendations for Policy and Programmes

Basic Model:  The Third Review and Appraisal of the World Programme of Action Concerning Disabled Persons noted that the inclusion of disability issues as a necessary part of development plan recognizes that the advancement of people with disabilities constitutes an essential prerequisite for future economic growth.    "The (General) Assembly thus envisaged what can be termed the 'disability perspective' on development.."10/  Thus, equalization of opportunities as envisioned in the World Programme must occur for development to occur, as follows:

Equalization of Opportunity

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Economic and Social Development

Thus, if a development programme does not consider how all persons in society will access its structural components, that plan is doomed to failure.  Thus, what is termed the "disability perspective" becomes a key element of development policies and programmes, as follows:

Disability Perspective

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Successful Development Policies

If this development perspective is applied to human rights initiatives, "The human rights of persons with disabilities now are recognized to be less the concern of a social group with particular needs and increasingly a prerequisite for advancing the rights of all."11/  Thus, human rights for all cannot be advanced without consideration of needs from a disability or functional perspective.

The Expert Group reaffirmed these findings of the Secretary General and stressed their importance.  Equalization of opportunities for all persons must be viewed as a necessary prerequisite for economic and social development.  The incorporation of the disability perspective as a key element of development policies and programmes is required for their successful implementation.

Two useful approaches can be employed to incorporate the disability perspective into development initiatives - accommodation and universal design.  Accommodation is the alteration of current environments to accommodate the needs of persons with disabilities.  Universal design is the planning and creation of environments that accommodate the needs of the entire population.

Where societal structures are advanced, accommodation is necessary.  At a certain level of development, a country may be unlikely to abolish existing structures and start over again.  Thus, current structures must be modified to meet the needs of people with disabilities.  Such structures and accommodations would be in place until structures are redesigned.

However, when structures are redesigned or new structures are put into place, the Secretary General urged the consideration of the principles of universal design.    "...as countries develop, they not only create new forms of societal structures but replace existing structures to replace new approaches and the needs of larger and more diverse populations in a more efficient and effective manner.  In recent years, many disability advocates have urged that increased attention be accorded to universal design approaches, which are defined as the planning and creation of environments that accommodate the needs of the entire population.  For instance, the application of universal design in educational policies and programmes will save countries the expenses associated with making schools and the school environment accessible to children with disabilities.  This will save on costs associated with institutionalizing people throughout their life.  An equally important consideration is that universal design can benefit student populations as a whole.  In a recent comparative study on development planning it was noted that there were disabled persons in all population groups, and that planning and design of development policies, programmes and projects that include the disability dimension as a natural element would add social value to the results of development activities, usually with minor or no costs."12/

Likewise, the Expert Group reaffirmed these findings of the Secretary General and stressed the importance of universal design.  Universal design approaches (that plan and create environments that accommodate the needs of the entire population) should be given priority as societal institutions are designed and developed.

If development cannot occur in the absence of the disability perspective, it becomes clear that policymakers and officials involved in the implementation of development programmes must be equipped with an understanding of the key elements of that perspective.    This requires an understanding of the key elements of the World Programme of Action and the Standard Rules on the Equalization of Opportunity for Persons with Disabilities.13/

Key Elements of United Nations Disability Policy Instruments:  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.

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.

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.

The Expert Group reaffirmed the importance of all of the Standard Rules.  All of the target areas in the Standard Rules on the Equalization of Opportunities for Persons with Disabilities should be monitored to evaluate progress towards the Implementation of the World Programme of Action Concerning Disabled Persons.

Accessibility:  The first target area for participation in the Standard Rules is Rule 5 on Accessibility.  Actually, Rule 5 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.  Indeed, 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.18/

In order to focus on accessibility, however, the distinction between the environment, participation and access must be understood.  If one examines employment, for example, it should be noted that equal participation in employment is a target of both the Programme and the Standard Rules.  That equal participation takes place if equalization of opportunities to participate is provided through measures to enhance accessibility to employment.  Thus, the elements of accessibility are characteristics of environmental availability but not characteristics of the environment.  A person may obtain employment but if he or she has not been provided with access to all elements of the employment situation, full participation in that environment has not occurred.

Obviously, environments can differ very much.  Not only is an employment environment different from an educational environment but employment situations can differ from each other to a great extent.  As this is the case, the question arises as to whether there are critical elements of any circumstances which must be made available to an individual for him or her to have true access to any situation.  If an understanding of these elements is to be useful in an international context, the elements should have certain attributes.  They must take into account social phenomena, because of their importance in implementing the World Programme and the Standard Rules.    They must provide a comprehensive profile of circumstances individuals face so that a complete understanding of all the prerequisites of access is obtained.   They must take into account differences in people by culture and age so that they have the widest applicability across countries in establishing a universal design to policy.   Finally, they should have the capacity to be analyzed from the environmental point of view so that the focus is not always on changing the individual, but rather on changing the environment.

Access and accessibility are concepts that are addressed several times throughout the World Programme of Action Concerning Disabled Persons.  The first time access is mentioned is in conjunction with the definition of Handicap, as follows:    "Handicap is therefore a function of the relationship between disabled persons and their environment.  It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens.  Thus, handicap is the loss or limitation of opportunities to take part in the community on an equal level with others."19/   The concept of accessibility is first discussed in conjunction with the definition of equalization of opportunities as the process through which the general systems of society are made accessible to all.20/   Instead of access, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities uses the term "available" instead of "accessible" in the context of defining equalization, perhaps because one of the Rules, Rule 5 is Accessibility.21/

If these concepts are viewed in context, it would appear that Handicap is the opposite of equalization of opportunities analyzed along the plane of access.  Thus, if access occurs, equalization of opportunities occurs.  If access is denied, Handicap ensues.    In this context, equalization of opportunities is a positive value, Handicap is a negative value and access is the unit of analysis.  Thus, an understanding of the key issues in access is a prerequisite for the design of programmes to enhance equalization of opportunities.

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.22/    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."23/    Thus, Rule 5 - Accessibility must be viewed as a pre-requisite to achieve the goals of the other target areas.  Such a model would be envisioned, as follows:

Rule 5 - Accessibility

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Rule 6 - Education

Rule 7 - Employment

Rule 8 - Income maintenance and social security

Rule 9 - Family life and personal integrity

Rule 10 - Culture

Rule 11 - Recreation and sports

Rule 12.  Religion

However. although accessibility is important, according to the Secretary-General, "...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."24/    Thus, the Expert Group determined that although access has not been discerned in a systematic way, it is of critical importance that such an evaluation should occur.

In order to assure that all persons can exercise their human rights, a systematic appraisal of access to societal institutions must occur.  Such an appraisal is also necessary to enhance economic and social development.  Seven dimensions of accessibility to the environment should be considered by disability and development programs as a test for whether opportunities have indeed been equalized.  These are orientation, independence, mobility, occupation of time, social integration, economic self-sufficiency and transition.  Their construct is as follows:25/

  1. Orientation, Who - do you have information you wish?
  2. Independence, What - do you choose what you wish to do?
  3. Mobility, Where - do you go where you wish?
  4. Occupation of Time, When - do you engage when you wish?
  5. Social Integration, With Whom - are you accepted by others?
  6. Economic Self-Sufficiency, With What - do you have the resources you need?
  7. Transition, Change - are you prepared for change?

These dimensions, the first six of which are derived from the World Health Organization's (WHO) 1980 trial Handicap classification, serve as a checklist for access.26/  Communities can ask themselves in any situation the following questions:  1) is information accessible? 2) do people have choices? 3) can people travel in the situation? 4) do people spend the same amount of time in a situation? 5) are people integrated? 6) do people have the resources to participate? 7) are people prepared for change in the situation?  Such a checklist would then constitute the prerequisite for target areas, as follows:

Rule 5 - Accessibility Dimensions:  Orientation, Independence, Mobility, Occupation, Social Integration, Economic Self-Sufficiency and Transition

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Rules 6 through 12

If most of these questions are addressed positively by disabled persons, their families and all people, then progress towards accessibility has probably occurred.  This progress should result in the fostering of equalization of opportunities, which in turn, would result in achievement of the target areas for participation in the Standard Rules.

Rural Issues:  In order to ensure accessibility, however, services and development activities must be focused on where people actually dwell.  For instance, in Ethiopia..., "Out of the total population the overwhelming majority, about 88.5 percent are living in rural areas while the remaining 11.5 percent reside in urban areas.26/  Given that most people in many developing countries live in rural areas, the overall disability prevalence rate reported is likely to be a function of patterns in rural areas.

Ethiopia is not alone.  For instance, roughly two thirds of Namibia's people were reported in the 1991 Census as living in rural areas.  Thus, as shown in Figure 2, the overall disability prevalence rate for Namibia follows a pattern more like that of rural than of urban areas.  Regardless of age group, rates are higher in rural than in urban areas.  Note that in the age group 65 years of age and over,  the difference in reported prevalence rates between rural and urban areas is quite large.    The differences between these two areas by age group are much larger than those for men and women.  In many cases, the rates for particular age groups in rural areas are higher than those for older age groups in urban areas.

Figure 2.  PREVALENCE RATES FOR DISABILITIES BY AGE GROUP FOR RURAL AND URBAN AREAS, NAMIBIA, 1991

Age Group in Years Total Rural Urban
Total 3.1 3.6 2.0
0 to  4 0.6 0.6 0.4
5 to  9 1.1 1.2 0.9
10 to 14 1.5 1.6 1.2
15 to 24 1.8 2.1 1.3
25 to 34 2.8 3.7 1.7
35 to 44 4.0 5.2 2.5
45 to 54 6.1 7.2 4.0
55 to 64 8.8 9.9 5.7
65 and over 18.0 19.1 13.2
Not stated 6.0 6.5 5.2

While it appears that the patterns for Namibia are quite apparent, further exploration reveals more information about the situation in that country.    When rates by age group, gender and urban and rural location are explored together, the strength of the urban-rural differential becomes quite apparent.  As demonstrated in Figure 3, rates are higher for men than women in both urban and rural areas for each age group.  However, the rates for rural females are higher than those for urban males in each age.  Hence, one can conclude that for Namibia, the residence difference in reported rates is greater than that by gender.

The Expert Group believes these patterns are of critical importance in considering how all persons have access to equalization of opportunities.  In many countries, the overwhelming majority of the population resides in rural areas, where services for all persons are scarce.  Consideration of rural issues is of critical importance for persons with disabilities in these countries.  Likewise, the association between poverty and disability needs to be addressed.

Figure 3.  PREVALENCE RATES FOR DISABILITIES BY AGE GROUP FOR MALES AND FEMALES AND RURAL AND URBAN AREAS, NAMIBIA, 1991

Age Group in Years Total Rural
Males
Rural
Females
Urban
Males
Urban
Females
Total 3.1 4.0 3.3 2.3 1.7
0 to  4 0.6 0.7 0.5 0.5 0.4
5 to  9 1.1 1.3 1.0 0.9 0.8
10 to 14 1.5 1.7 1.4 1.4 1.0
15 to 24 1.8 2.4 1.7 1.6 1.1
25 to 34 2.8 4.8 2.9 2.1 1.3
35 to 44 4.0 6.6 4.0 3.0 1.8
45 to 54 6.1 8.8 6.0 4.5 3.4
55 to 64 8.8 11.5 8.7 5.9 5.5
65 and over 18.0 20.1 18.2 13.5 12.9
Not Stated 6.0 5.9 7.3 5.9 3.1

This may require a different system for delivering services.  For instance, existing programmes in urban areas may have to be altered to accommodate persons with disabilities.  In rural areas, non-existent programmes cannot be adjusted to accommodate persons with disabilities.  This means as development programmes are established in rural areas, universal design approaches must be incorporated to make such programmes accessible to all, as follows:

Rural Areas (if programmes do not exist):

Rule 5 - Accessibility Dimensions, Universal Design

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Rules 6 through 12

Urban Areas (if programmes do exist):

Rule 5 - Accessibility Dimensions, Accommodations

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Rules 6 through 12

Obviously, these recommendations are not hard and fast.  If rural areas do have services, accommodations may be in order.  Likewise, many urban areas may not have any programmes or services and could benefit from universal design.  The point is to target the approach to accessibility to the realities of where people live.

Education and Employment:  In targeting accessibility, as noted earlier, the Expert Group reaffirmed the importance of all of the Standard Rules.    However, in resource scare environments, 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.  The lack of programmes in rural areas and issues of poverty around the world point to the need to prioritize target areas for participation.  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.

The Third Review and Appraisal already noted a "...focus on the implementation of Rule 6 (Education) and Rule 7 (Employment), since these are two substantive areas cited in the World Programme of Action as being important to the equalization of opportunities for disabled persons."28/  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.

Thus, while all the Standard Rules are important, the Expert Group believes that scarcity of resources requires prioritizing these two areas and that, at a bare minimum, education and employment be selected for the establishment of concrete goals for persons with disabilities.  In this sense, implementation of Rules 6 and 7 constitutes a prerequisite for achievement of the other rules, as follows:

Rule 5 - Accessibility Dimensions

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Rules 6 and 7 - Education and Employment

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Rules 8 through 12

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 targeted 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.

Recommendations for Monitoring and Indicators

Basic Concepts:  In the implementation of disability policies and programmes, 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.29/    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.30/

Thus, 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.

Education and Employment Indicators:  From the above, it is clear that any time a goal or objective is set, there should be indicators for that goal or objectives.  Thus, the recommendations that member States must consider employment and education as target areas implies that at a minimum, indicators for Standard Rule 6 - Education and Rule 7 - Employment should be developed.

Fortunately, international standards for measuring education and employment are currently available.  Criteria for measurement of these two areas are relatively advanced, with data having been collected in many countries for several years.  The United Nations Educational, Scientific and Cultural Organization (UNESCO) and the International Labour Organization (ILO) have already established systems to measure programmatic outputs in these areas.  Thus, establishing indicators for education and employment is both important and feasible.  Examples of education indicators are educational attainment (children reaching grade 5 of primary education and the adult secondary education achievement level), school attendance and literacy (the adult literacy rate).31/  Examples for employment are unemployment and labour force participation rates.32/  Many of these have been proposed indicators by the United Nations for sustainable development for all persons.  The use of these indicators is thus in keeping with 1984 Expert Group recommendation that indicators used for all persons be employed for persons with disabilities.33/  This allows for comparison of the situation of persons with disabilities with other persons.  Such a schematic might be viewed as follows:

Variable                                                             All Persons         Persons with Disabilities

Education:
Educational Attainment
School Attendance
Adult Literacy Rate

Employment:
Unemployment Rate
Labour Force Participation Rate

Other Indicators and Population Breakdowns:  Although education and employment are recommended for a minimum programme, such recommendations should not be viewed as encouraging exclusion of other indicators where available.  Indeed, where countries report indicators for all persons, breakdowns of these indicators for persons with disabilities should also be reported.  Use of existing international standards is recommended.  For instance, when conducting a census, countries should consider the United Nations Principles and Recommendations for Population and Housing Censuses.34/

Just as establishing indicators to compare progress towards specific target areas for persons with disabilities as compared to the general population is critical for assessment, 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 disadvantaged are not necessarily small in number -- they may constitute the majority of the population."35/

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."36/

Aside from disability, the United Nations has recommended isolation of statistics on gender, children and youth and the elderly.37/  However, education and employment indicators may not be applicable to the elderly.  School attendance applies mainly to children in the school ages and educational attainment 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 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.38/

Thus, for all indicators measured, indicator breakdowns by gender, age, and rural-urban areas by disability should be included.  Where countries report breakdowns for other variables such as poverty, breakdowns for persons with disabilities should also be reported.  Again, United Nations standards should be employed for these variables.

Poverty represents a different challenge from the demographic variables.  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.39/    "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."40/

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.

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.41/

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.42/   An environmental definition is consistent with that offered by Disabled Persons International (DPI): "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."43/

At this point in time, no definition for disability has been universally adopted.    However, the DPI and other environmental definitions have clearly 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 WHO'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."44/   The Standard Rules noted 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."45/  However, the passage of WHO's new International Classification of Functioning, Disability and Health (ICF) marks a dramatic departure from the attempt to define disability at a particular level.46/   In fact, functioning and disability are comprised 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.   "Functioning is an umbrella term encompassing all body functions, activities and participation; similarly, disability serves as an umbrella term for impairments, activity limitations or participation restrictions.”47/   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.  The need to measure such a population is clear if for no other reason than to measure progress towards achieving education and employment goals and objectives.  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.

Such a definition should be rigorous.  For instance, Zambia collected disability data in 1969, 1980 and 1990.  The country employed an organ function approach, as opposed to a personal function approach, and collected information in all three years on blind, deaf and/or mute and physical categories and usually on a mental category.    However, Zambia included sick persons as disabled in 1969  and 1980, but not in 1990.  If one only examines the total disability rate for Zambia over time, one would conclude that there has been a steady decline in the prevalence of disability between 1969 and 1990.  While this may have been true between 1969 and 1980, as documented by Figure 4, the observed decline between 1980 and 1990 was totally caused by the elimination of the category for sick in 1990.  In 1969 and 1980, those counted as sick accounted for 50.8% and 37.8% of the reported population with disabilities.    Even if one assumes some that a) the prevalence rates for sickness dropped between 1980 and 1990 in a similar manner to the drop between 1969 and 1980 and b) some persons who may have been reported as sick were reported in other categories in 1990, the elimination of that reporting category has an effect on how the data are interpreted.    If the trend between 1980 and 1990 is examined employing the 1990 disability reporting structure, the prevalence rate per 100,000 did not decline from 1,615 to 936 but actually increased from 610 to 936 per 100,000.  Thus, here is a case where the categories reported as disabilities may actually influence the resulting trend.

Figure 4. PREVALENCE RATES FOR DISABILITIES, ZAMBIA, 1969, 1980 AND 1990 AND FOR SICK AND DISABLED PERSONS, ZAMBIA, 1969 AND 1980

Prevalence rates for disabilities in Zambia

Sources:  Republic of Zambia, Census of Population and Housing 1969, Final Report Volume I-Total Zambia (Lusaka, Central Statistical Office, 1973, pp. 11-14, Table 4 and p. 36, Table 18.

The focus here is not on whether Zambia should or should not have included the sick category as a reported disability category.  The important point is that any change in this important decision has important ramifications.  Fortunately, Zambia simply dropped the category, which make it possible to examine the changes in the other categories between 1980 and 1990 (assuming the other wording changes did not influence the resulting trend).

This issue is also dramatized by the Tunisian data for adults 15 years of age and over, as well.  Here, despite the relative similarity of categories, the number of women reported with disabilities in 1975 was extremely low.  Between 1975 and 1994, while the number of disabled men reported more than doubled, the number of reported disabled women reported grew by over times.  As shown in Figure 5, this resulted in the percentage of women in the disabled population tripling between 1975 and 1994.    [Actually, the data demonstrate this change primarily occurred between 1975 and 1984.]

Figure 5.         PERCENTAGE MALE AND FEMALE AMONG DISABLED PERSONS 15 YEARS OF AGE AND OVER, TUNISIA, 1975 AND 1994

1975 1994
Females = 2,660 Females = 33,274
pie chart, females 10.4%, males 89.4 pie chart: women=37..8, men =62.2
Males = 22,900 Males = 54,736

Sources:  Tunisia, Institut national de la statistique, Recensement general de la population et des logements, 8 Mai 1975, Volume III, Caracteristiques demographiques, tableaux et analyses des resultats du sondage au 1/10eme75 (Tunis, Author, 1975).

There are many reasons to speculate as to whether disabled women were undercounted in 1975.  If the change is a definitional or statistical artifact, it can clearly influence outcomes that are associated with gender.  For instance, between 1975 and 1994, reported economic activity rates for reported disabled Tunisians 15 years of age and over declined slightly.  However, as shown Figure 6, the rate for men actually increased over the period.  The rate for women declined by over 70%.

Figure 6.         ECONOMIC ACTIVITY RATES BY GENDER FOR DISABLED PERSONS 15 YEARS OF AGE AND OVER, TUNISIA, 1975, 1984 AND 1994

Economic activity rates decreasing for women from 1975 to 1994

  *Note:  The rates for males and females for 1984 are interpolated due to lack of data for that year.

Sources:  Tunisia, Institut national de la statistique, Recensement general de la population et des logements, 8 Mai 1975, Volume III, Caracteristiques demographiques, tableaux et analyses des resultats du sondage au 1/10eme75 (Tunis, Author, 1975) and Recensement general de la population et de l'habitat, 30 Mars 1984, Volume IV, Caracteristiques demographiques (Tunis, Author, 1984).

Thus, two factors come into play to explain what appears to be a lack of progress in economic activity.  First, if economic activity rates tend to be lower for women than for men as they were reported in 1994, the increasing prevalence of women in the disabled population could have the effect of lowering the overall rate of labour force participation for persons with disabilities.  Second, the participation rate for women in 1975 was higher than for men, suggesting that the 1975 female disabled population was undercounted to such an extent that those who were counted formed a population that may have not been truly representative.  Between 1975 and 1994, the number of reported disabled women in the labour force grew from 610 to 1,910 in Tunisia, actually more than tripling.

Without a clear understanding of how the disabled population changed during this period, an economic activity indicator activity could be misinterpreted.  One might conclude that participation in the labour force had deteriorated in Tunisia between 1975 and 1994 when the reverse may have been true.  Certainly, an understanding of the characteristics of the women who entered the disabled over the period aids in interpreting the indicator.

Returning to Zambia, the removal of sick persons from the disabled population in 1990 influences interpretation of the trend in economic activity.  Labour force participation rates rose for all men and women between 1980 and 1990.  For women, the rate almost doubled from 16 to 32%.  For sick and disabled women, the rate does not increase by as much, growing from 13% to 23%.  However, as shown in Figure 7, if only disabled women are counted in 1980, the rate more than doubles from 10% to 23%.    While less dramatic, the inclusion of sick men in 1980 inflates the rate for men.

Figure 7.         ECONOMIC ACTIVITY RATES BY GENDER FOR ALL AND DISABLED PERSONS 12 YEARS OF AGE AND OVER, ZAMBIA, 1980 AND 1990 AND FOR SICK AND DISABLED PERSONS, ZAMBIA, 1980

       Males

chart showing increasing rates from 1980 to 1990

     Females

  chart showing increasing rates from 1980 to 1990, a faster increase than with Males.

Of course, it is also important that the definition of economic activity also not change over time.  An issue here is that disability has, in many countries, been counted as a category of non-participation in the labour force.  To have a robust indicator, the disability as a reason for non-participation in the labour force category has to be disassociated from measures of the disabled population.  If not, an effect of multicollinearity would occur, where the dependent variable, or the indicator in this case, is so highly correlated with disabled persons that it is influencing the trends in the indicator.

In recent years, a consensus has begun to emerge as to how to identify a disability-related population that is separate from variables related from socio-economic results.  The definition is based on personal, as opposed to organic functioning, because people may not be aware of specific medical details but will be aware of their daily personal actions and activities; hence, a wider net is cast.48/   The following broadly defined categories have been recommended by the United Nations Statistics Division as basic - seeing, hearing, speaking (talking), moving, body movement, gripping/holding, learning,  behaviour and personal care.49/   The identification of such a population with functional conditions appears useful so that variables, such as education and employment, can be compared between that population and the population as a whole.  Thus, the United Nations Statistics Division’s recommended approach for measuring disability should be considered to identify a population potentially needing services for persons with disabilities.50/    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 WHO's 1980 Trial International Classification of Impairments, Disabilities and Handicaps (ICIDH).51/

Although technically useful and possible to measure, the identification of such a population with functional conditions appears to contradict the DPI and other environmental definitions for disability.  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."    In keeping with WHO's new ICF approach, the definitional emphasis should be viewed as an emphasis on personal functioning as opposed to disability.  A Risk Disability Population should be defined as persons with functional conditions who are at risk for 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, social and other environmental barriers.  Thus, the population is not viewed as being disabled or having disabilities.  Note, too, that the definition refers to functional conditions, not limitations.  Rather, disability is viewed as potential experience; the concept of risk should be useful for public health purposes.  Moreover, the use of conditions places the issue of function in neutral, rather than negative, terms.

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.  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.

Recommendations for Involvement of Persons with Disabilities

In terms of risks for denial of opportunities, there are several issues of concern expressed by disability rights groups related to new biomedical and human genetics developments.  These can be grouped around five human rights issues: non-discrimination, justice, diversity, autonomy/informed consent and participation.52/   According to Dr. Denise Avard, "Although there is no direct link between genetic mutations and disabilities, many of the concerns about the impact of human genetics tend to focus on prenatal testing and screening, with potential far-reaching ethical, social and legal implications.  Although genetic technology has a place in medical sciences and the results can be used for an increased quality of life, negative aspects such as reduced facilities for treatment, “blaming the victim” and discrimination are real dangers. Apart from legal protection of disabled people, there is a general agreement that disabled people are not consulted enough and lack a voice to help develop and regulate the direction of these important technologies."53/

There is a need to recognize that advances in human genetics and biomedical developments raise ethical issues for all members of society and for persons with disabilities, issues regarding their rights to justice, diversity, non-discrimination, autonomy, and informed decision-making.  There is a need to monitor genetic and other biomedical developments to ensure scientific developments do not undermine the human rights of the individual.  Persons with disabilities, their families, or their representatives should be consulted, represented, and systematically involved in committees and debates about genetics and biomedical technologies.  If these steps are taken, denial of access to a variety of areas can be reduced.  This links backs to the accessibility and universal design approaches cited earlier in this report.

Representation of persons with disabilities is required not only in the above described health areas, but in all facets.  Such representation needs to be monitored.    For instance, in the past, greater coordination of disability efforts has been urged but progress in this area is still lacking.  Coordination and cooperation to implement the World Programme of Action must be put into action by the International agencies, countries, NGO’s, consumer groups, and professional associations.  An office to coordinate disability efforts should be established at these levels.    International organizations should provide resources to support capacity building for countries, NGO’s, consumer groups, and professional associations.   Such capacity building should document the positive contributions of individuals with disabilities.

Summary and Conclusions

The Expert Group believes that these recommendations provide a unified approach towards monitoring and evaluation.  In such a unified model, shown in Figure 8, the building blocks move from accessibility through education and employment, using universal design approaches wherever possible.  Unique issues facing rural areas need to be considered which may particularly benefit from universal design.  Once education and employment for all are enhanced through accessibility, then social and economic development will occur.  That this is a model for all is emphasized by not isolating disability as a state, but rather an experience that all persons face.  In such a model, personal functioning, rather than disability, needs to be stressed.  By focusing on monitoring functioning and access, the Expert Group believes that resources can be brought to bear to achieve progress towards all the goals of the World Programme of Action.

Looking ahead, passage by the General Assembly on 28 November 2001 of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities brings a new policy instrument to link with the World Programme of Action and the Standard Rules.54/  The General Assembly has established an Ad Hoc Committee to elaborate the instrument, "based on the holistic approach in the work done in the field of social development, human rights and non-discrimination..."55/    The Ad Hoc Committee may wish to incorporate the holistic model presented by the Expert Group in its discussions.

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 other meetings (Children's issues in Panama in 2000 and Sustainable Development in Indonesia in 2002) provide forums to focus on the association of disability with development.  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.

Figure 8.INTERNATIONAL MODEL RELATING ACCESSIBILITY TO ECONOMIC AND SOCIAL DEVELOPMENT

Rule 5 - Accessibility Dimensions:  Orientation, Independence, Mobility, Occupation, Social Integration, Economic Self-Sufficiency and Transition

Rural Areas                     arrow pointing down                  Universal Design

Rules 6 - Education

Rule 7 - Employment

arrow pointing down

Rule 8 - Income maintenance and social security

Rule 9 - Family life and personal integrity

Rule 10 - Culture

Rule 11 - Recreation and sports

Rule 12.  Religion

arrow pointing down

Economic and Social Development

 

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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 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.

3/         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.

4/         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.

5/         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.

6/         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.

7/         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.

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

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

10/       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), pp. 3-4, paragraph 5.

11/       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 8.

12/       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.

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

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, 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.

19/       United Nations General Assembly, World Programme of Action Concerning Disabled Persons (New York, United Nations A/37/51, 1983), p. 3.

20/       United Nations General Assembly, World Programme of Action Concerning Disabled Persons (New York, United Nations A/37/51, 1983), p. 3.

21/       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. 11 and pp. 22-23.

22/       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.

23/       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.

24/       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.

25/       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.

26/       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. 181-207.

27/       Gebreselassie, Abera, "Country Paper on Disability Sensitive Evaluation and Monitoring," paper on Ethiopia presented to the United Nations Expert Group Meeting on Disability Sensitive Evaluation and Monitoring (New York, United Nations, 3 December 2001), p. 1.

28/       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. 7, paragraph 29.  See also United Nations General Assembly, World Programme of Action Concerning Disabled Persons (New York, United Nations A/37/51, 1983), pp. 22-23, paragraphs 64-70.

29/       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.

30/       ibid.

31/       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. 75-77, paragraphs 2.144-2.157; United Nations Commission on Sustainable Development, Indicators for Sustainable Development: Guidelines and Methodologies (New York, United Nations, 2001), pp. 39-41 and pp.110-119; 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).

32/       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. 78-84, paragraphs 2.165-2.208; United Nations Commission on Sustainable Development, Indicators for Sustainable Development: Guidelines and Methodologies (New York, United Nations, 2001), pp. 74-78; International Labour Organization, Surveys of Economically Active Population, Employment, Unemployment and Underemployment - An ILO Manual on Concepts and Methods (Geneva, International Labour Office, 1992).

33/       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.

34/       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).

35/       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).

36/       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.

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. 131-133, paragraphs 3.62 to 3.79.

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), pp. 64-65, paragraphs 2.52 to 2.59.

39/       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.

40/       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.

41/       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.

42/       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.

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

44/       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.

45/       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.

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

47/       World Health Organization, International Classification of Functioning, Disability and Health: Short Version (Geneva, World Health Organization, ISBN 92 4 154544 5, 2001, pp. 3-4.

48/       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. 93, paragraph 2.261.

49/       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. 93-94, paragraph 2.264.

50/       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. 92-95, paragraph 2.258-2.277.

51/       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.  These recommendations were adopted by the Expert Group in a New York meeting in September 1996.   SeeUnited 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.

52/       Avard, Denise, "Human Genetics Research and Practice: Implications for People with Disabilities," paper presented to the United Nations Expert Group Meeting on Disability Sensitive Evaluation and Monitoring (New York, United Nations, 5 December 2001), p. 4.

53/       Avard, Denise, "Human Genetics Research and Practice: Implications for People with Disabilities," paper presented to the United Nations Expert Group Meeting on Disability Sensitive Evaluation and Monitoring (New York, United Nations, 5 December 2001), p. 7.

54/       United Nations General Assembly, Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities (New York, United Nations A/C.3/56/L.67/Rev.1, 2001).

55/       United Nations General Assembly, Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities (New York, United Nations A/C.3/56/L.67/Rev.1, 2001), p. 211, paragraph 1.  

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