4.4 Data Collection and Monitoring

Qualitative and quantitative data play a key role in monitoring the inclusion of persons with disabilities. Data should be disaggregated on gender, age and disability and contain information on risks and barriers as well as perceptions and coping mechanisms of persons with disabilities. This will enable humanitarians to make informed decisions on the design, implementation, monitoring and evaluation of an inclusive humanitarian response (IASC, 2019, pp.23–31).

Almost all respondents highlighted the dearth of data on persons with disabilities as a significant impediment to inclusion. The country figures from the latest national census of 2008 are not reliable, and the government lacks the expertise and the financial means to conduct a new countrywide census.

Moreover, at the humanitarian coordination level, lead agencies, above all OCHA, have so far missed the opportunity to include disability systematically in inter-agency coordination mechanisms. Consequently, robust data on disability for all sectors and areas is unavailable and depends on the efforts of single agencies and organizations. The annual needs overviews, on which the response plans are based, only reflect fragmented data accumulated from individual organizations and projects. One respondent comments on the process and explains:

Representative of a United Nations agency

Every year we have the annual Humanitarian Needs Overview and the humanitarian response plan that comes out of that. There is always the question: “Where are we going to get the data from?” When I say “we”, I mean humanitarians in general. We borrow in piecemeal ways from different surveys but there is no kind of one consolidated approach. I think that the reason why we have this lack or this dearth of information is that the top level does not have a strategy for demanding it.

However, the very fact that the Humanitarian Coordinator with the Humanitarian Country Team started to recognize the gap in data collection and started requesting information from organizations is in itself a sign of progress towards inclusive humanitarian action. Before 2020, Humanitarian Needs Overviews did not include any data on disability at all.

Another respondent, a cluster coordinator, confirms the assessment that data on disability is still lacking, but simultaneously highlights the progress and achievements in comparison to the previous year:

Representative of an INGO

Up until at least last year, we did not collect data on persons with disabilities. Last year, we have collected information on how many persons with disabilities we are reaching out to in our interventions, but this is just information provided by partners. So maybe it is not so representative but at least we tried to collect it for the last one year, if I am not mistaken. Now we are definitely making more of an effort to ensure that the assessments have more substantive information. […] The aim has been to try to put Washington Group Questions into the protection-monitoring tool that is under development. So at least it would get us a better idea of who among the affected communities is a person with a disability.

The health cluster already introduced such a tool in 2019. However, cluster members did not apply it systematically until donors began demanding data on disability (interviews with representatives from an INGO and a United Nations agency).

Although the gaps in the collection, analysis and use of data are significant at all levels, there have been attempts to address these gaps. For example, two annual countrywide surveys, the Food Security and Nutrition Monitoring Survey and the Multi-Sector Needs Assessment, have integrated the Washington Group Short Set of Questions. The latest Food Security and Nutrition Monitoring Surveys for the capital Juba and Bentiu/Rubkona Town reveal that more than 40 per cent of all households have a member with a disability (IOM 2021a and 2021b).19

At the organizational and project level, some United Nations agencies have dedicated focal points or protection-mainstreaming officers who have the task of reviewing internal documents with respect to disability inclusion. For example, they try to ensure that all their assessments incorporate the Washington Group Short Set of Questions (interview with a United Nations agency). In addition, they work with disability and/or inclusion-focused organizations to train enumerators on their correct usage. IOM, in cooperation with HI, has also published comprehensive barriers and facilitators reports on accessible education and health and now, a few years later, respondents confirm that reporting on disability has become a component of many humanitarian projects. One respondent says:

Representative of a United Nations agency

The awareness and knowledge of the necessity to collect data is there because donors are quite strict and ask for such data. Sometimes there are many challenges in reporting effectively on disability. But it’s certainly always a component of our work. The requirement and request has been made by donors. You cannot submit a project proposal without talking about how your project is going to take into consideration the persons with disabilities.

These examples give hope that more reliable figures on disability, and assessments on ongoing needs and protection gaps, will soon become part of humanitarian practice. To support organizations in this process, inclusion-focused organizations, such as HI and CBM, also provide dedicated training courses to their mainstream and government partners (interview with an inclusion-focused NGO). Donors also play a crucial role in promoting these endeavours and could use their power of the purse to push for the systematic collection, analysis and use of data in humanitarian needs assessments and response plans, as well as in humanitarian programming more generally.20