Cover graphic for the HPN Network Paper Addressing the disability data gap in humanitarian action Cover graphic for the HPN Network Paper Addressing the disability data gap in humanitarian action Photo credit:
Ensuring disability counts in humanitarian programming: addressing the data gap
by Sarah Collinson October 2020

The past five years have been pivotal for advancing disability inclusion in the humanitarian sector. While the raft of new global declarations, standards and guidelines have brought global attention to this issue, work on the ground has been led by disability organisations to address gaps in practice. One of the weakest links in current practice, however, remains a lack of data about people with disabilities. Most humanitarian actors lack even the most basic information about numbers and needs of people with disabilities and the threats and barriers they face in accessing services; they are also unsure how best to go about collecting and using this data.

At present, people with disabilities are estimated to represent 15% of the world’s population;+1. WHO and World Bank (2011) World report on disability. Geneva: WHO, Chapter 2 (www.who.int/disabilities/world_report/2011/report/en/). however, this figure is often higher among populations affected by crisis. In the case of Syria, for example, a recent survey found that 27% of people aged 12 years and over have a disability and, in some governorates,  the majority of households were found to have at least one or more member with a disability.+2. Humanitarian Needs Assessment Programme for Syria (2019) Disability: prevalence and impact: a nationwide household survey using Washington Group methodology. HNAP for Syria. (www.globalprotectioncluster.org/wp-content/uploads/Disability_Prevalence-and-Impact_FINAL-2.pdf).

If people with disabilities are not visible in the data and systems underpinning humanitarian programmes, the institutional imperatives to pay attention to their needs and to ensure or account for their inclusion is weakened+3. Holden, J., Lee, H., Martineau-Searle, L. and Kett, M. (2019) Disability inclusion in humanitarian programming. Disability Inclusion Helpdesk Research Report No. 9. London: Disability Inclusion Helpdesk (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/833579/query-9-evidence-humanitarian-response1.pdf).. This represents a profound challenge to the impartiality of humanitarian action.

Box 1: Varying concepts of disability affecting disability data Traditionally – and in many administrative data collection systems – disability has been approached as a binary ‘yes’ or ‘no’ matter (i.e. when answering the question ‘do you have a disability?’). This leads to significant under-reporting of disability prevalence due to stigma and differing understandings of what is understood as a disability. By contrast, universal models of disability – such as the model underpinning the WHO’s International Classification of Disability (ICF) – approach disability as a continuum, in line with the Convention on the Rights of Persons with Disabilities, which stresses that ‘disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’. More inclusive and impartial programming will depend on agencies collecting and using a combination of both statistical and qualitative data which, when analysed together, can provide a full picture of the number and circumstances of people with disabilities. The IASC Guidelines on inclusion of persons with disabilities set out four main types of information collection and analysis on people with disabilities that agencies need at each phase of the programme cycle to support the delivery of quality inclusive humanitarian responses:

  1. identifying the population of people with disabilities;
  2. analysing the risks they face and the factors that contribute to those risks;
  3. identifying the barriers that impede them from accessing humanitarian assistance; and
  4. understanding their roles and capacities in the humanitarian response.+4.IASC (2019) Guidelines: inclusion of persons with disabilities in humanitarian action.

This may seem a significant challenge, particularly given the operational pressures and constraints that organisations contend with in crisis response situations. But there is growing consensus on some of the most appropriate instruments and approaches to support disability data collection, sharing and use among humanitarian actors.+5. Including the IASC Guidelines; ECHO – European Civil Protection and Humanitarian Aid Operations (2019) The inclusion of persons with disabilities in EU-funded humanitarian aid operations. DG ECHO Operational Guidance (February)  (https://ec.europa.eu/echo/sites/echo-site/files/dg_op_guidance_inclusion_gb_liens_hr.pdf); and DFID Humanitarian Investment Programme (2019).

Identifying the population of people with disabilities: quantitative data collection

A number of recent studies have successfully used the Washington Group Short Set of Disability Questions (WG-SS) to collect population-level quantitative data. The WG-SS is a widely-used and internationally endorsed set of six targeted questions on individual functioning to identify people with disabilities in a given population group (see Box 2). By integrating the WG-SS into existing surveys, humanitarian organisations can:

  • understand the prevalence of people with disabilities to inform strategic planning frameworks;
  • measure and monitor access to services by people with disabilities, with potential for further disaggregation by sex, age or other relevant characteristics to highlight potential barriers for specific groups; and
  • disaggregate programme indicators by disability to better understand the situation of people with disabilities and the effectiveness of humanitarian programmes.

A key source of evidence supporting a widening endorsement of the WG-SS use in humanitarian programming is a UK Aid-funded study led by Humanity & Inclusion (HI) from 2016 to 2019, in collaboration with the Washington Group, which tested and assessed the WG question sets through action research with a range of operational partners in Syria, Jordan, the Philippines and the Democratic Republic of Congo+6. Available at: https://humanity-inclusion.org.uk/en/projects/disability-data-in-humanitarian-action#9.The project supported a range of humanitarian actors+7. Including UN agencies, INGOs, local NGOs, government agencies and disabled people’s organisations (DPOs). working in different sectors+8. Including multi-sector, food security and livelihoods, WASH, protection, health and disaster risk reduction. and contexts+9. Including sudden onset emergencies, displacement and refugee emergencies, protracted crisis and disaster-prone contexts.to integrate the WG-SS questions into their existing practices and explored the practicalities and utility of the questions for generating useful and reliable data on disability among affected populations. The findings of the HI project are strongly corroborated by further indicative evidence emerging from other organisations’ use of the WG-SS in a range of development and humanitarian settings.+10. For information on this HI project see https://humanity-inclusion.org.uk/en/projects/disability-data-in-humanitarian-action. Further information on other organisations’ use of the WG-SS, see Collinson, S. (2020) Addressing the disability data gap in humanitarian action. HPN Network Paper 85, Box 5.

Box 2: Disability measurement and monitoring using the Washington Group Short Set of Questions on Disability Not all people have the same understanding of what disability means. Therefore it is important that the questions used to obtain disability data are appropriately designed and implemented. The Washington Group Question sets are intended to facilitate the comparison of data on disability cross-nationally. They are derived from the WHO’s bio-psychosocial concept of disability and its International Classification of Functioning, Disability, and Health (ICF). The Short Set of Questions on Disability (WG-SS) is designed to be used in conjunction with other measurement tools within a larger survey or registration process to enable disaggregation of other population measures (e.g. age or sex) by disability status. The focus on functioning and the brevity of the tool mean that it can be relatively easily used in a variety of settings, including, potentially, humanitarian response contexts. The questions intentionally do not use the word ‘disability’, but instead ask people how much difficulty they have performing basic universal activities in each domain (walking, seeing, hearing, cognition, self-care and communication) with answers categorised into ‘no difficulty’/‘some’/‘a lot’/‘cannot do it at all’. Disability is determined, according to the WG-SS, as anyone having at least ‘a lot of difficulty’ on at least one of the six questions. The WG-SS will identify most but not all people with disabilities. Longer ‘Enhanced’ and ‘Extended’ question sets include questions on mental health/psychosocial functioning, and the Washington Group has developed a Module on Child Functioning in conjunction with UNICEF to identify a fuller range of childhood disability for children and youth aged 2–4 and 5–17.

While the challenges should not be underestimated, there is little doubt that, when the WG-SS Questions have been used, the reliability of quantitative data on people with disabilities has been significantly improved (see, for example, Box 3). As concluded by HI, if, through the use of the WG-SS, disability prevalence is found to be orders of magnitude higher than previously assumed, this should directly impact programme planning and implementation and may raise potentially far-reaching questions about how organisations understand and operationalise disability inclusion.+11. Humanity & Inclusion and Leonard Cheshire (2018) Disability data collection: a summary review of the use of the Washington Group Questions by development and humanitarian actors. London: Humanity & Inclusion and Leonard Cheshire; and Humanity & Inclusion (2019) Data on persons with disabilities in humanitarian action: collecting quantitative data with the Washington Group Questions. London: Humanity & Inclusion.

Assessment data on the situation and needs of people with disabilities

The Washington Group Questions do not on their own provide a framework for needs or vulnerability and capacity assessments, nor do they inform organisations about the specific barriers that people with disabilities face or the enabling factors that help them in crisis response situations.

A fully inclusive and mainstreamed approach to disability-responsive programming will depend to a great extent on carefully adapting mainstream assessment tools to incorporate the collection of data on persons with disabilities+12. ECHO (2019). Focused attention must be given pre-crisis at both headquarters and operational levels both to modify the assessment frameworks appropriately and to put in place the necessary awareness-raising and training to ensure a quality and mix of data to inform inclusive responses.

Box 3: Varying disability prevalence rates reported among Syrian refugees in Lebanon with and without using the WG-SS In 2013, UNHCR data reported that 1.4% of registered Syrian refugees in Lebanon had disabilities, based on self-identification against its own categories covering a number of impairments: physical (moderate and severe), mental (moderate and severe) and visual, hearing and speech impairments. Using the WG-SS, a joint HI and iMMAP assessment found a disability prevalence of 22.9% in Lebanon, with 59.9% of sampled households including at least one member with disabilities, compared with only 14% of households identified in a previous vulnerability assessment. Source: Humanity & Inclusion and iMMAP (2018) Removing barriers: the path towards Inclusive access disability assessment among Syrian refugees in Jordan and Lebanon: Lebanon report (https://d3n8a8pro7vhmx.cloudfront.net/handicapinternational/pages/5144/attachments/original/1537200833/Lebanon_Removing_Barriers_2018_Report_Final_web.pdf?1537200833)While the constraints on disability data collection and use are very real in the earliest stages of an emergency response, at later stages, and particularly in protracted crises, time and resources should not pose a significant barrier to collecting assessment data. Where staff have been sufficiently prepared through prior training and sensitisation in disability inclusion, agencies should not face significant methodological barriers – the same methodologies routinely used in vulnerability, needs and protection are needed for disability-focused assessments. As detailed in new guidance on strengthening disability inclusion in HRPs, existing assessment frameworks and methodologies can be modified fairly easily to include attention to people with disabilities and the intersectional risks that they face+13. DFID Humanitarian Investment Programme  (2019) Guidance on strengthening disability inclusion in Humanitarian Response Plans (https://reliefweb.int/sites/reliefweb.int/files/resources/Guidance_on_strengthening_disability_inclusion_in_Humanitarian_Response_Plans.pdf): this includes the Multi-Sector Initial Rapid Assessment (MIRA), the Needs Assessments for Refugee Emergencies checklist (NARE/UNHCR), the Vulnerability Assessment Framework (VAF/UNHCR), the Humanitarian Emergency Settings Perceived Needs Scale (HESPER/WHO), the Displacement Tracking Matrix (DTM/IOM), and the JIPS Essential Toolkit (Joint IDP Profiling Service)..

Data and information on programming barriers and enabling factors affecting inclusion

Wherever assessments have focused on the needs of people with disabilities, findings highlight significant accessibility and inclusion barriers in humanitarian programmes that substantially compounded the risks, threats and vulnerabilities experienced by people with disabilities. A recent evidence review+14. Holden et al. (2019), op cit. uncovered multiple factors limiting and excluding people with impairments from accessing humanitarian services and programming. Furthermore, a 2013 rapid participatory assessment of the situation of people with disabilities among IDP populations in Northern Iraq found that most service providers were passively excluding people with disabilities and identified minimal active inclusion+15. Handicap International [Humanity & Inclusion] (2013)..

It follows, therefore, that humanitarian actors need data about their own responses and the institutional barriers and enabling factors within mainstream humanitarian programming  to successfully deliver more inclusive programmes. Service accessibility audits and assessment have a key part to play, as does performance monitoring using disability disaggregated data (based on the WG-SS). As highlighted by the IASC Guidelines, donors also have a key role in requiring humanitarian actors to disaggregate data by disability (and sex and age), to deliver results frameworks that include specific outputs or outcome indicators for people with disabilities, and to use resource tracking markers to identify projects that are disability-inclusive+16. IASC (2019), p.27..

Conclusion

As the quality of the data on people with disabilities in crisis contexts has improved, it has started to reveal that the numbers, needs and barriers affecting people with disabilities are far greater than previously recognised. This challenge has become even more urgent in the context of the Covid-19 pandemic, which introduces a new and potentially devastating intersecting factor of vulnerability for crisis-affected populations.

The needed step-change in disability data collection and analysis and wider strengthening of disability inclusion will not come about simply because the data shows that it should. Substantial investments are needed to equip and resource systems and staff, as well as effective coordination among humanitarian actors in collecting, sharing and using this data. More robust accountability frameworks across the system will also support better inclusion of people with disabilities in humanitarian responses going forward. Humanitarian actors must adopt a fully inclusive approach to the collection of this data and to the decisions and practices informed by it, ensuring that people with disabilities are fully involved at every stage.

Sarah Collinson is a Research Associate at ODI and an independent consultant focusing on humanitarian policy research and inclusion.