Humanitarians aim to ensure no one is left behind, yet traditional data collection during disasters often overlooks people with disabilities. Research indicates that individuals with disabilities are up to four times more likely to die in emergencies, highlighting the urgent need for inclusive approaches. A new innovation, co-created and tested with people with disabilities, seeks to close this gap by ensuring they are represented and supported in emergency response and planning.
The Survey for Inclusive Rapid Assessment (SIRA) is an open-source, screen-reader-accessible tool designed to capture the experiences of people with disabilities and older adults during crises. SIRA assesses both the barriers and enablers individuals face in accessing humanitarian assistance, aligning with the Inter-Agency Standing Committee’s “must-do actions.” The tool was developed collaboratively by Light for the World and Mozambique’s national umbrella Organisation of Persons with Disabilities (FAMOD), making it the first fully inclusive data collection tool for crises.
Central to SIRA’s development was the principle “Nothing about us without us.” People with disabilities led the process from design to data collection and advocacy, ensuring the tool was accessible and reflective of lived experiences. Field testing in Cabo Delgado, Mozambique, involved nearly 2,500 internally displaced people and provided insights that quantitative data alone often misses.
SIRA demonstrates that numbers alone do not reveal the full picture. Many humanitarian programs struggle to identify people with disabilities and understand the barriers they face, compounded by stigma and discrimination. By combining quantitative screening tools, such as the Washington Group questions and Child Functioning Module, with qualitative interviews, SIRA captured both prevalence and personal experiences. For instance, data in Cabo Delgado showed that people with disabilities comprised over 30% of affected populations when psychosocial functioning was considered, revealing a higher prevalence than previous estimates. Interviews also highlighted fears of injury, harassment, or accidents as major obstacles to accessing support.
Digital technologies and artificial intelligence enhance accessibility and inclusion in emergencies, allowing for rapid data collection and analysis. SIRA integrates digital tools to enable people with disabilities to participate as both respondents and data collectors and includes a referral mechanism connecting participants to available services. Aggregated findings provide evidence to guide programming and support advocacy for more inclusive humanitarian action.
Inclusion cannot wait until after a crisis. People with disabilities and OPDs must actively lead in data ecosystems, from preparedness planning to response and recovery. UN surveys reveal that many lack personal preparedness plans, reflecting systemic gaps. Inclusive data ecosystems empower people with disabilities to collect information, plan interventions, refer individuals to services, and advocate for systemic change, ensuring their needs are addressed proactively.
SIRA also enables action based on evidence. Organizations like FAMOD have used data from Cabo Delgado to advocate for better support for people with disabilities and older adults, influencing Mozambique’s humanitarian response plan for 2025. The results demonstrate that when people with disabilities lead data collection and planning, responses become more equitable, effective, and responsive to the real needs of affected populations.
