Disability Data For Effective Policy Design: Reflections From The TEACH Project In Pakistan
The lack of data on disability, as the United Nations Conventions on the Rights of Persons with Disabilities notes, has been the biggest obstacle to developing disability sensitive policies and programmes. However, the incorporation of reliable and simply worded questions on disability, as part of wider household surveys and national census, can provide invaluable insights regarding intersectionalities between disability and other factors, e.g., gender, in regards to access to education and socio-economic status. The data produced and insights gained can become the foundations for effective policy design.
Pakistan is one country where a focus on disability is still at a nascent stage. Both advocacy and policy making would benefit from reliable data, particularly on issues such as prevalence rates, quality of life experienced by persons with disabilities and the inclusion/exclusion of persons with disabilities from various mainstream processes.
Although Pakistan has historically collected information on disability prevalence, it has relied on unsophisticated tools to do so. The national census conducted in 1998 included a traditional binary question on disability: “Do you suffer from any disability?” Yes/No. Almost two decades later, the sixth national census undertaken in 2017, initially did not include a single question on disability. A last minute addition on disability was made to the existing questionnaire, in response to an intervention by the Supreme Court. [1]Nonetheless, the binary nature of the questions being asked and the process of adding these questions after data collection had begun is an interesting reminder of the need for the continued push for stronger mechanisms of holding institutions accountable for gathering disaggregated, robust and meaningful data on disability.
While specialized, sample-based surveys on disabilities are undertaken by international development organizations in Pakistan, for example a survey undertaken by the Poverty Alleviation Fund in 2012, their use remains very limited to stand alone programs. While some progress has been made in recent years, [2]having questions on disability included in multi-sectoral and large scale surveys, such as the National Nutrition Survey (usually covering 120,000 households across the country) has largely remained a struggle.
As part of the Teaching All Children Effectively (TEACh) project we used the Washington Group’s Child Functioning Module for children aged 5 to 17 years. We collected data across 1050 households in 3 districts of Punjab province. Our findings note some important results, particularly in relation to education, which was a key focus of the TEACh project.
Our survey suggests higher prevalence rates of disability than currently noted in Pakistan according to the previously mentioned surveys. 11.2% of children in our sample were reported as having moderate to severe difficulties in 12 (of the 13) functioning domains of the Child Functioning Module[3]. This is higher than other surveys in Pakistan, which usually note prevalence rates between 1 and 2%. One important reason for this difference, in our view, is how the Washington Group questions have been framed in a simple language which is easy to communicate and explain. Additionally, we undertook a very careful iterative translation process of these questions from English to Urdu. We trained our enumerators on how to administer the survey questions, but also helped them appreciate the underlying reasons for adopting a bio-psycho-social approach to understanding disability.
Our data suggests, that children who were reported to have moderate and severe disabilities were more likely to be living in relatively economically disadvantaged households. As shown in Figure 1.