Why data disaggregation?
The international community is calling for more investments on data disaggregation to monitor the progressive achievement of the Sustainable Development Goals (SDGs). Timely and reliable data disaggregation helps identify gaps among different social groups and strata, and supports evidence-based policy-making processes. For example, identifying gaps between those with and without a disability is a first step towards addressing disparities. Data disaggregation processes, however, should not be viewed just as a formality; rather, they represent an essential step towards ensuring the rights of the vulnerable and marginalized populations in each country are guaranteed.
Data disaggregation is key to monitor development interventions and formulate evidence-based policy.
The purpose of collecting disaggregated data is to provide a more complete understanding of various sectors in order to plan and develop better policies, programs and interventions. Data disaggregated by income, sex, age, race, ethnicity, migratory status, disability and geographic location, or other characteristics is key to monitor development interventions and formulate evidence-based policy.
Disability statistics: the example of Nepal
As a signatory country to Agenda 2030 and the SDGs, Nepal needs to follow the framework provided by the Global Goals. The country demonstrated some efforts to operationalize data disaggregation in the implementation of the SDGs, including the development of a framework, methodologies and other tools for implementation. However, there have been very few discussions on importance and implication of data disaggregation, and the status of data disaggregation by disability leaves much to be desired in Nepal.
In Nepal, there are differences in the official estimates of the prevalence rate of disability. According to the National Population and Housing Census 2011 (National Report), the prevalence of disability is 1.94%:
“About two percent (1.94%) of the total population reported to have some kind of disability. Physical disability constitutes 36.3 percent of the population with disability followed by Blindness/Low Vision (18.5%), Deaf/Hard to hearing (15.4%), Speech problem (11.5%), Multiple Disability (7.5%), Mental Disability (6%), Intellectual Disability (2.9%) and Deaf-Blind (1.8%).”
Similarly, the Nepal Living Standards Survey 2010/11 states that 3.6 percent of people have some kind of disability. The report states:
“Overall, 3.6 percent of people have some kind of disability. Similarly, the disability rates for males and females are 4.2 percent and 3.0 percent respectively. Of all persons with some kind of disability, 29.2 percent are physically disabled, 22.3 percent have the visual related disability, 23.4 percent hearing-related disability, 2.4 percent vision/hearing-related disability, 8.6 percent speech-related disability, 6.8 percent mentally retarded and 7.3 percent have multiple disabilities.”
Representatives of Disabled People’s Organizations (DPOs), however, claim that the number of people with disabilities in the country is higher than the official records of the government, and question the methodology used in the surveys to capture disability statistics.
Data collection tools
How to collect exact data on disability? Which data collection tools are suitable for censuses and national surveys to identify disability prevalence rate? Are traditional ways of asking question sufficient to collect disability data? Or is there any method that could minimize controversies and collect reliable data?
The Washington Group on Disability Statistics has come up with answers to many questions and queries related to disability data. The UN Statistical Commission established the Washington Group on Disability Statistics in 2002, and since then the group – with membership from over 100 national statistical offices – has developed a set of six questions that can identify persons with disabilities for disaggregation purposes in an internationally comparable way.
Over the past 15 years the WG has tested several tools to be used for the collection of internationally comparable disability statistics, including the short set of disability questions. These questions have already been tested in many countries around the world and the UN Disability Data Experts Group has recommended them for use in disaggregating the SDGs and also for monitoring the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
Moving forward
As mentioned in a background note by the Office of the United Nations High Commissioner for Human Rights (OHCHR), a human rights approach to data disaggregation requires reaching the most vulnerable and marginalized groups. It further implies ensuring that human rights safeguards are in place for the collection, processing, analysis and dissemination of that data. As the world invests energies and resources to achieve the Global Goals, therefore, governments around the world must act now to ensure that data is disaggregated using the best tools available, to ensure that no one is left behind.
[Cover photo © janneke staaks]