United Nations
Disabled Persons Bulletin

Bulletin No 2 of 1999 Page 5/6

Development of global disability indicators³⁷

Basic parameters for indicators established by the World Programme of Action³⁸

There is a crucial distinction between indicators and monitoring. Indicators are data elements that are believed to provide the best measures of progress, while monitoring refers to the practice of setting goals and objectives and then establishing evaluation criteria to determine whether the goals and criteria have been achieved. Indicators are tools for monitoring progress towards goals and objectives.

According to Scott Campbell Brown, a health and development policy specialist from the United States, a set of global indicators could have a value as those sets of elements that best reflect the situation of persons with disabilities in a country, effectively controlling for the demographic and socio-economic characteristics of persons with disabilities and those of the total population. To have value, disability indicators should have several attributes:

• First, they must be viewed as useful by persons with disabilities, their families and other interested communities;
• Second, they should be determined to be useful reflectors of what they purport to measure through standard scientific criteria;
• Finally, there should be a reasonable, non-arbitrary limit on their number.

A set that meets these criteria can provide an indication of the situation, for the focus of indicators should be on providing indications, not on their goal-related values.

Based on the monitoring process, three types of indicators may be identified: (a) statistical indicators of changes over time, (b) measures of programme assessment and performance, and (c) measures of the achievement of specific targets.

Progress in the development of disability indicators and in monitoring

Country activities³⁹

As noted above, the census constitutes the major source of disability data for many countries. Since 1980, at least 12 countries have produced census tabulations on education and 15 have produced tabulations on employment variables. Two countries (Cyprus and Zambia) have data from two censuses on education and employment, while Tunisia has data from two censuses on employment.

Many countries have conducted surveys as well as censuses. Since 1992, at least 36 countries have included questions on disability in a census, obtained information from a survey or obtained estimates. Information was obtained on age and gender (17 sources), education and labour force variables (5 sources), urban and rural residence (9 sources), marital status (4 sources), cause of disability (10 sources) and other topics (4 sources). Of particular interest is the relatively high number of countries collecting data on etiology.

A clear pattern of increasing coverage can be discerned. While it appears that few countries have established clear indicators of progress towards the goals of the World Programme of Action, data related to the target areas of the Standard Rules are being collected and are published to a greater extent. While little progress appears related to gathering data for indicators of the environment and specific life areas, the situation for indicators of overall outcomes appears promising.

Activities of international organizations

International organizations have taken steps towards monitoring disability among children. WHO and the United Nations Children’s Fund (UNICEF) reached an agreement on indicators for monitoring the health goals of the World Summit for Children. To monitor progress towards the goal of improved protection of children in especially difficult circumstances, two broad indicators were proposed: (a) the total number of persons with disability of six months duration and (b) the total disability rate per 1,000 children. Disability categories covered are seeing, hearing and speaking, moving, learning and comprehending, behaviour and other disability. Dissagregations would occur by age groups (under 5, 5 to 14, 15 to 19, and 20 years of age and over) by men and women, and by urban and rural areas. Another potential indicator considered is recent rehabilitation service coverage. WHO has incorporated these issues into its broad programme indicators.

WHO and the World Bank have also collaborated in efforts to develop quality of life indicators, based on adjustments to life years. This effort has been considered controversial in some quarters, because disability is equated on a scale with death and because the estimates are based on clinical estimates of prevalence, as opposed to information obtained from DISTAT.

… indicators discussed thus far appear to be somewhat more oriented to the goals of prevention and rehabilitation than to equalization of opportunities.

The indicators discussed thus far appear to be somewhat more oriented to the goals of prevention and rehabilitation than to equalization of opportunities. While few formal indicators have been established in this area, the United Nations Educational, Scientific and Cultural Organization (UNESCO) has participated in an Organization of Economic Coordination and Development (OECD) process to develop indicators of special needs education, which could provide indicators based on needs as opposed to disability category.

Coverage is an important issue for international organizations to consider when establishing data for indicators for equalization of opportunities. When the Special Rapporteur on Disability first conducted his survey (in late 1994), only 38 Governments submitted data. In the second survey (in late 1996), the number increased to 83, representing a survey coverage of 45 per cent of the member States. In the UNESCO study, as noted above, a request for information was sent to 70 countries, of which 52 or 74 per cent responded. Information is available on many issues, but it clearly would be desirable to improve coverage of these surveys further.

As noted earlier, the United Nations Statistics Division has made great progress towards the compilation of disability statistics. By establishing topics for tabulation in DISTAT and by drafting recommendations for the collection of data, both of which have a good association with the Standard Rules, the Division has provided a solid foundation of topics from which to select indicators of outcomes.

While it is clear that much promising work has begun on such mainstreaming in the development of disability policies, much remains to be done in the area of policy implementation. Hence, a focus on monitoring policy implementation is a critical component for promoting the actual implementation of those mainstreaming policies. Such integration implies not only a stress on improving outcomes but an emphasis on changing the environment and enhancing access, which means that monitoring must occur in these areas as well. ⁴⁰

Use of data and indicators as tools for effective implementation of the World Programme of Action⁴¹

Another issue is the use of data and indicators as tools for effective implementation of the World Programme of Action. Here at least three sources of tension were revealed:

• Between the desirability to have a true set of international standards for all people and to respect country and cultural differences;
• Between the need to adjust to changes over time and the need to have comparable data over time;
• Between the need for data on access and the environment at a time when such data are not readily available.

As with the issue of definition of disability, it has been argued that these tensions need not form insurmountable obstacles but need rather to be addressed practically and clearly. One way to address these issues is to consider the strengths and resources of countries. This approach contributes to revealing the problems in analysing data over time, and also has great potential for indicator development.⁴²

It was a case studies approach that showed that disability data could be collected routinely, which resulted in the creation of DISTAT. DISTAT has been a tool that has encouraged interest not only in disability data issues but interest in the entire disability field. This interest allowed DISTAT to be employed to choose three countries as case studies to look at disability data over time, an activity that was virtually impossible at the time the World Programme of Action was adopted. The case studies, although pinpointing problem, do indicate that development of data for monitoring and indicators is feasible and desirable.⁴³

Many trends will have impacts on the prevalence of disability within the population and on persons with disabilities…

The data obtained so far indicate that during the next five years, many trends will have impacts on the prevalence of disability within the population and on persons with disabilities. As infant mortality declines, children who otherwise might never have died prematurely will live longer lives. As the population ages, the number of older persons with disabilities will increase. Many persons may find themselves caring for a child and a parent with disabilities. As persons with disabilities grow and develop and age, the trends just mentioned will influence their transition through life. It is thus likely that the importance of promoting the disability perspective will increase.⁴⁴

Quantitative basis to assess progress made and to identify obstacles encountered in the implementation of the World Programme of Action

In the more than 15 years since the adoption of the World Programme of Action (in 1982), the estimate by WHO that over 500 million of the world's population are people with impairment or disability remains in wide use. Data on disability are significant in their absence in a recent review of data compendiums of select development reports prepared by the World Bank and by bodies and organizations of the United Nations system.⁴⁵

Moreover, due to time lags between data collection and analysis, there were few population-based data sources covering the 1992-1997 period. Thus, a report prepared by consultants for the United Nations Secretariat contained data for Australia, Botswana, China and Mauritius for various years between 1987 and 1991 and confirmed data patterns in the original DISTAT: disability increases with age, educational attainment appears lower for persons with than those without disabilities and that economic activity rates are lower. As such, it is unlikely that population-based data for the period of appraisal can be employed at the time the appraisal is due. They can, however, be employed at a later date and, as discussed below, analyses of long-range trends are possible.⁴⁶

The current state of international monitoring mechanisms can be assessed as follows:

• First, the United Nations is clearly moving towards a systematic structure of populated-based data collection and analysis, with solid scientific standards;

• Second, this system offers the possibility for long-range programme appraisal but, due to time constraints, is unlikely to provide data pertaining to appraisal periods at the time of the appraisal;

• Third, though reviews and appraisals have occurred periodically, the reviews and appraisals have not relied upon a uniform set of monitoring criteria, which would allow for comparisons of progress over time (for instance, was more progress made between 1993-1997, as compared to a period 10 years earlier?).⁴⁷

Ideally, indicators would be established at the beginning of a period for review and appraisal, with baselines and specific targets. Actual change over time could be observed, with information explored to explain any disparities between specific targets and actual indicators. Such a set of indicators was unavailable for the current review and appraisal of the World Programme of Action. Given the lag time between data collection and publication in a census, it is unlikely that the data required to produce disability indicators from the 2000 round of censuses will be available in 2002, when a fourth review and appraisal is envisaged. Nevertheless, the progress in data development discussed earlier establishes a sound basis for long-range development of indicators.⁴⁸

While data improvements have been substantial, data for comparative analyses across time and across countries are somewhat limited. The development of statistics related to the target areas in the Standard Rules and to the environments encountered by persons with disabilities is important. Technical cooperation, training and exchanges of information can make the critical difference in the development of these statistics in the national context. ⁴⁹

As in the policy, programme and implementation strategy areas, it is critical that the United Nations continue to provide leadership in the monitoring and evaluation of the World Programme of Action. In this regard, it is important that the United Nations Statistics Division be provided with resources appropriate to engage in a variety of activities with countries, such as:

• Routine revisions of DISTAT;
• Technical assistance on request for the collection and analysis of disability data;
• Systematic electronic storage of data reported by countries;
• Regular publication of technical monographs on data collection and analysis, as well as compendiums and technical manuals for DISTAT. DISTAT represents an important system-wide resource for monitoring at the international level, particularly of the situation of persons with disabilities in countries;
• Data and information support for activities of the Division for Social Policy and Development in connection with the monitoring and evaluation of the World Programme of Action.

Further work on indicators for monitoring and evaluation⁵⁰

As data are developed, countries are urged to consider the Long-term Strategy for monitoring and evaluation. Organizations of persons with disabilities and their families should be actively involved in the process of developing and implementing these evaluation activities. In particular:

• Monitoring activities should consider all of the dimensions mentioned above - socio-economic outputs, environmental variables, disability-specific variables, variables on access and empowerment, programme outputs and programme inputs;

• The situation of persons with disabilities should be assessed within the framework of ICIDH (1980);

• To assess equalization of opportunities, countries are urged to explore adapting the ICIDH handicap classification (1980) to measure variables related to information exchange, independence, mobility, use of time, social integration, economic self-sufficiency and transition outcomes;

• Where resources permit, countries should use the impairment classification, particularly in relation to prevention goals;

• When resources are scarce, it is recommended that countries consider placing a priority on monitoring the situation of persons with disabilities related to education and employment or on areas where they are prepared to take action based on the results of the evaluation activities.

The United Nations plays an important role in providing support to country-level monitoring activities, and in continuing work on the development of techniques for monitoring variables related to the environment and to access and empowerment.

Examples of how the United Nations may be involved include routine monitoring of the implementation of ILO Convention No.159 and provisions of the Salamanca Statement and the Framework for Action on Special Needs Education, and publication of the results.⁵¹

At the national level, the establishment of disability indicators and the provision of support for the comprehensive measurement of those indicators are important. In this regard:

• Variables and indicators need to be selected and measured periodically;
• Indicators should refer both to specific disability initiatives and to broader national initiatives that may impact on persons with disabilities;
• Organizations of persons with disabilities should be actively involved in activities for monitoring the World Programme of Action.⁵²

Indicators clearly need to be linked to short-term and medium-term targets as well as to selected legal and policy instruments for the 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.⁵³

Issues in monitoring and data collection⁵⁴

Four issues emerge from the efforts of the United Nations to monitor, collect and compile official national data on the progress made and obstacles encountered in the implementation of the World Programme of Action:

• First, although comprehensive monitoring of all aspects of the environment as it facilitates the achievement or hindrance of all three goals of the World Programme of Action is clearly important, few countries systematically collect data on environmental variables;

• Similarly, the areas of life where the environment can hinder equalization of opportunity, such as independence, use of time, social integration, economic self-sufficiency and lifecycle transitions, have not been systematically measured;

• Third, resource constraints can hinder the collection of data on all important topics related to disability;

• Fourth, the success of certain data-collection efforts under conditions in which resources are scarce suggests the wisdom of setting clear priorities in any data-collection effort.

Data-collection efforts cannot be viewed in isolation from the overall aims of United Nations programmes in the social and economic sectors. Options selected to improve the monitoring of programme implementation, including the development of indicators to measure and assess programme progress, must focus on expected outcomes of the respective programme goals and objectives. If the measures of programme efforts demonstrate apparent success but desired outcomes are not achieved, an assessment of the particular determinants of expected outcomes is critical. Environmental determinants of programme performance and critical areas of life are often difficult to measure when resources are scarce, particularly in a census. The paradox is 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 lifecycle changes represent the types of indicators that can predict whether desired outcomes are being achieved.

There is an observed tendency for the information collected on disability to relate to topics where the data are perceived to be the most accurate and not to those where data maybe difficult to obtain. Often this perception has reflected a social welfare rather than a social development perspective, since data related to prevention and rehabilitation often are those areas that need to be addressed to bring forth meaningful social change. Thus, care must be taken to ensure that the priorities for collecting data do not become the priorities for social policy. As policies encompassing universal design, the empowerment of persons with disabilities as development agents and human rights are adopted, these polices would drive decisions on disability indicators.

37 See Scott Campbell Brown, programme monitoring and evaluation: the disability perspective in the context of development. Home page of the United Nations: Division of Social Policy and Development at: http://www.un.org/esa/socdev/enable/monitor/dme41.htm; updated 24 November 1999.
38 See Scott Campbell Brown, loc. cit., " Development of global disability indicators".
39 Ibid.
40 See Scott Campbell Brown, loc. cit., "Conclusions and recommendations".
41 Ibid.
42 Ibid.
43 Ibid.
44 Ibid.
45 See Scott Campbell Brown, "Options for improving programme monitoring trends in policies and programmes from the disability perspective".
46 Ibid.
47 Ibid.
48 Campbell Brown, loc. cit., "Conclusions and recommendations".
49 Ibid.
50 Ibid.
51 Ibid.
52 Ibid.
53 Ibid.
54 See A/52/351, paras. 48-50.

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