How NGOs can close the disability data gap in crises

Humanitarians say no one should be left behind. Yet when disasters strike, the data they rely on often erases people with disabilities.

Research shows people with disabilities are up to four times more likely to die in emergencies. A new innovation, co-created and tested by people with disabilities, aims to close the disability data gap by ensuring they are included — not ignored — in emergency response and planning.

What is SIRA?

The Survey for Inclusive Rapid Assessment (SIRA) is an open-source, screen-reader-accessible tool built with and for people with disabilities to ensure they are counted, heard and supported in emergencies. It is deliberately designed to assess the barriers and enablers people with disabilities and older people face in accessing humanitarian assistance, and with The Inter-Agency Standing Committee’s (IASC) four “must-do actions” in mind.

The SIRA tool was co-created by Light for the World and FAMOD (Forum das Associações Moçambicanas de Pessoas com Deficiência), Mozambique’s national umbrella Organisation of Persons with Disabilities (OPD).

We believe it is the first fully disability and older age-inclusive data collection tool for crises.

Here are five lessons we learned from the co-creation and testing and how NGOs can use them to make data genuinely inclusive — and save lives in emergencies.

“Nothing about us without us” isn’t a slogan — it’s a data principle

About one in six people globally has a disability. In humanitarian contexts, the number of people with disabilities is often much higher.

In co-creating SIRA, people with disabilities were at the centre of the process, from tool design and testing to data collection, analysis and advocacy. OPD members shaped everything from the wording of the questions to the way interviews were conducted. With people with disabilities in the lead from the start, we knew we would have an accessible tool and approach, generating results that reflect the lived experience of disability and older age during emergencies.

Teams from FAMOD, including Disability Inclusion Facilitators, led field testing of SIRA, assessing nearly 2,500 internally displaced people in Cabo Delgado, Mozambique.

Numbers alone don’t make people visible

Many humanitarian programmes struggle to identify people with disabilities within affected communities and to further identify the barriers they face in accessing assistance. Stigma and discrimination can further hinder open disclosure and accurate reporting.

Combining quantitative data with qualitative insights helps humanitarians identify people with disabilities, while giving a voice to interviewees. SIRA uses the standard disability screening Washington Group questions and Child Functioning Module to map prevalence and access, with open-ended interviews to capture qualitative insights.

Comprehensive data on the actual prevalence of people with disabilities in emergencies is rare. But by collecting stories as well as statistics, we reveal new insights. For example, in Cabo Delgado in 2024, we found people with disabilities made up over 30% of people affected when also considering psychosocial functioning — a higher prevalence than most data suggests. And, by taking time to conduct deeper interviews, we found a key barrier to support was fear of accident or injury — or even harassment when seeking access to services.

Digital technologies and AI can foster accessibility and inclusion

In emergency situations, speed is essential. Identifying or understanding the specific needs of people with disabilities and older people is not a priority, risking cutting them out of relief efforts.

Accessible technologies can support the full participation of people with disabilities as both data collectors and respondents. Digital tools allow quick collection of qualitative data in high-stress settings and AI can facilitate rapid assessment of the risks and barriers for those who may be vulnerable.

SIRA features an embedded referral mechanism which connects participants to available services where possible, while aggregated findings can inform future programming and give communities evidence to push for change.

Inclusion can’t wait until after the emergency

People with disabilities and OPDs must lead the way in creating inclusive data ecosystems. Only through the direct involvement and lived experiences of people with disabilities can we build a humanitarian system that leaves no one behind.

We must recognise their capacity to meaningfully contribute to preparedness planning, response and recovery. People with disabilities know best what they need in a crisis, but are too often left out of planning. A 2023 UN Survey found “unacceptable failures” to protect people with disabilities from disasters, with 71% of those surveyed lacking a personal preparedness plan.

An inclusive data ecosystem means people with disabilities are actively involved in data collection, inclusive disaster planning, referring affected populations to support and lobbying for more inclusive programmes.

Inclusive data leads to action

A key element of the Data That Matters project, that produced the SIRA tool, was to empower OPDs like FAMOD and support them to use evidence-based insights to advocate for inclusive humanitarian action.

FAMOD has already used the results of data collected in Cabo Delgado to lobby for better understanding of, and increased support for, people with disabilities and older people in humanitarian situations. The data informed the Mozambican humanitarian response plan for 2025, and humanitarian and governmental organisations regularly contact FAMOD for their expertise in inclusive data.

Our hope is that SIRA gives every humanitarian actor a practical way to commit to inclusion during crises. The results prove that, when people with disabilities and older people are in the lead, action is more equitable, data more meaningful and responses more effective.

SIRA — which was produced under the Data That Matters project, with funding by Elrha and UK Aid — is open-source and available for NGOs, UN agencies and governments to pilot. Organisations interested in testing SIRA or adapting it for their context can access the tool and how-to guide (available in English, Portuguese or French).

For enquiries related to SIRA, please contact:

Nadir Abu-Samra-Spencer, Expert, Data and Research, Light for World: [email protected]
Clodoaldo Castiano, Director of FAMOD (especially related to Mozambique): [email protected]