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III. OPTIONS FOR IMPROVING PROGRAMME MONITORING TRENDS IN POLICIES AND PROGRAMMES FROM THE DISABILITY PERSPECTIVE

D. Issues in data collection

1. Data availability

Some of the issues related to the conceptualization of monitoring are applicable to issues related to data availability. However, by clearly establishing monitoring evaluation criteria, then determining resource constraints and finally setting priorities, data issues then fall properly into the operationalization arena. At this point, scientific solutions can be applied to address statistical issues that may arise.

United Nations recommendations for the development of data bases on disability follow similar principles to the recommendations cited in the preceding section. Although some may seem similar, the recommendations apply specifically to the data development that occurs, once monitoring priorities have been set. These recommendations are as follows:[164]

1. consult people with disabilities;
2. review ethical standards;
3. define the population of interest;
4. define the domains of interest, including topics, indicators and research and policy questions;
5. review existing sources of information;
6. make the appropriate commitments for time and resources to initiate survey work;
7. consider how the data will be used before finalizing plans for data collection;
8. assess the quality and detail of the data to be collected;
9. decide how precise and accurate the statistical information needs to be in terms of sampling and non-sampling errors;
10. use probability sampling when appropriate considering types of sampling and sample size;
11. enhance the comparability between different sources of information;
12. review and use previous work on the validity of various methods of collecting data on disability;
13. assess costs and sources of funding; and
14. disseminate survey results widely.

Although dissemination is listed last, it is a good idea to have a sense of the appearance if dissemination results when data plans are derived. For disseminating data, United Nations recommendations note that tabulation plans for disability data should include not only prevalence rates by gender and age and type of disability but also tabulations comparing persons with and without disability on key social and economic characteristics. Such characteristics are variables included in DISTAT, including rural and urban residence, living in a household or an institution, size of household, marital status, cause of disability, school attendance, educational attainment and activity status. Further elaboration of these variables is provided in Annex II, which includes a technical appendix on data and statistics for disability policies and programmes.

If the resources are available to conduct a disability survey, there are at least two important considerations related to monitoring. Disability-specific surveys provide an excellent opportunity for the collection of useful information that serves as an incentive to action. In this regard, countries need to consider what constitutes the best data programme for monitoring and what is the role of the disability-specific survey in that programme. The two issues are the periodicity of the survey and its capacity for providing comparisons to the total population.

With regard to periodicity, as noted earlier, the World Programme anticipated the collection of information over time. The very notion of monitoring implies that change over time is measured. Thus, countries need to consider that a one-time survey, while providing much useful information about the disability experience, may not be the most effective monitoring tool, because the information generated is current and applicable for only a specified period of time. Countries may wish to consider embarking on a programme of periodic surveys to monitor progress towards United Nations goals related to persons with disabilities. At the same time, if resources are available to measure disability over time in censuses or other surveys, a one-time disability-specific survey can provide detailed information not available elsewhere.

The comparison to persons without disabilities is another important consideration. It is understandable that when resources are made available for a disability survey, there is a reluctance to devote scarce resources to the collection of information about persons without disabilities. However, as a monitoring tool, if that information is not available, the ability to assess progress towards Programme goals may be limited. Attaching a disability supplement to an ongoing survey may prove an attractive option. Such an option may allow for surveys of family members on the impact of the disability experience on them, as well as for surveys of persons without disabilities on their attitudes towards disability.

To obtain information on disability, the importance of administrative records should not be overlooked. This issue has been addressed somewhat in the discussion of programme outputs, but it should be noted that many administrative records data bases obtain periodic measurements that can be quite useful for monitoring. Moreover, the possibility for linking survey data to administrative data offers the potential to obtain many different types of information for one person without having to exhaust that person with an extensive questionnaire. Confidentiality issues do need to be seriously addressed in such situations.

As noted earlier, perhaps the most important issue in terms of data availability is the lack of information historically on the environment variables and major life areas. Here disability-specific surveys can play an important role, but it is clear that major efforts are required to bring about a situation in which collection of such data are routine. Again, administrative records data can provide useful information for these variables.

2. Integration with other data collection efforts

If resources are limited, priority should be placed on obtaining information from other data sources. For example, certain countries may be in a situation where the only national data collected are from a periodic census. If so, the benefits of collecting data in the census should be considered. A census provides for the collection of detailed information at the sub-national level, which may provide useful tools for planning at the community level.

If more resources are available, greater detail can be obtained from a sample survey. However, most surveys do not have a sample population large enough to produce valid estimates at sub-national levels. The tradeoff between a census or a survey effort is between sub-national information or more detailed information. In many developing countries, given that censuses occur regularly, the decision tends to favour collection of information through the census.

If a census is used, the frequency with which information is collected is dictated by the frequency of the census. If surveys are employed, their frequency may be dictated by the availability of funds and the frequency of surveys on other topics. Given the interaction between disability and other areas as well as the incorporation of disability issues into human rights areas, the routine incorporation of disability issues into ongoing surveys may offer an attractive option, if funds are not available for an ongoing programme of disability surveys.

At the same time, tradeoffs can occur that would be in keeping with the integration of United Nations human rights efforts in a broad framework. For example, issues related to women and children can be routinely incorporated into disability data collections and issues related to disability could be incorporated into data collections on women's and children's issues. For example, disability questions could be routinely asked in fertility surveys.

Those who monitor other development issues may find the environmental variables and life area concepts useful for monitoring issues related to poverty and assessing the situation of the general population. The key consideration in integrating disability issues with other data collection efforts is to identify opportunities for the effective leveraging of resources in data collection efforts. This may require a holistic view towards data collection in which disability statistics are recognized as one important element of a comprehensive data system.

Notes:

[164] Manual for the Development …, pp 61-86.

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