Localizing Disability Data Collection Methodology to the Indian Context

The previous blog focused on global good practices for using data as an enabler to tackle emerging challenges, such as contact tracing during CoViD-19. As such, similar practices can be adopted in India to collect citizen-centric disaggregated disability data to ensure fair and effective delivery of welfare services along with basic and essential services. Such data can also give us evidence of the needs of persons with disabilities that can help devise future inclusive interventions. However, that said, the importance of designing a contextual methodology that is localised and specified to the needs of vulnerable communities/groups, especially persons with disabilities, cannot be understated.

In this context, in the framework of the “Building Accessible, Safe & Inclusive Indian Cities(BASIIC)” of the National Institute of Urban Affairs (NIUA), in collaboration with the United Nations Educational, Scientific and Cultural Organization (UNESCO), launched the “Good Governance for Urban Inclusion Through Data and Empowerment of Persons with Disabilities”(GUIDE). The initiative piloted in Varanasi sought to strengthen participatory data systems on issues related to disability inclusion at the city level and provide the evidence needed for city planners/administrators to design, revise, and adapt plans and programmes/guidelines to be disability inclusive. GUIDE advocates for inclusive and participatory data with local stakeholders, i.e., - persons with disabilities from the community, local non-government organisations working with persons with disabilities, civil society groups, and sectoral experts from the local government departments. In this blog, the participatory methodology of the GUIDE project, used to collect disaggregated disability data, has been discussed in detail.

The production of inclusive data demands the involvement of persons with disability in all data collection processes and outcomes so that it adequately reflects the nuances in the evidence being generated. Such data is key to eliminating discrimination based on disability, accelerating efforts toward disability-inclusive programming, and ensuring inclusion beyond just representation. With this motto, the GUIDE project started with an expert roundtable consultation where subject matter experts from academia/research, city officials, policymakers and DPOs, were invited to discuss and validate the methodology and approach initially designed by NIUA. The consultation sought suggestions and guidance on the ways and methods of practically collecting disaggregated data on disability at the ground level using the participatory methods, and how they can be convincingly presented to make a policy-changing impact.

Following the expert consultation, a city stakeholders’ consultation, inviting city officials, local civil societies and persons with disabilities was organised in Varanasi, the pilot city for the GUIDE methodology. This helped to build consensus on the study's approach, identify key service delivery gaps within the city of Varanasi, and shortlist the priority sectors related to basic and essential services. The consultation overall strengthened the process of localising and standardising the methodology to collect disaggregated disability data at the city level. Parallelly, constant liaison with the local government, institutions, and local NGOs also helped understand the ground realities, capture quality information and identify the gaps, to have a preemptive approach to risk management while collecting data.

After the consultations, a comprehensive question bank was developed to support the formulation of questionnaires for Focus Group Discussions (FGD), Key Informant Interviews (KII), and Personal Interviews (PI). For the FGDs, a group of 10-12 participants with disabilities were identified based on their gender and socio-economic background to ensure representation from a diverse set of user groups. The information and learnings mapped from FGDs were fed into the questionnaires KIIs and PIs to validate the information regarding the priority sectors identified during the city stakeholders' consultation. The KIIs were conducted with city officials to understand the service delivery system in the pilot city; and PIs, with city officials from the key sectors to understand the identified services in detail, and department-specific provisions for persons with disabilities.

Upon the mapping of the information from FGDs, KIIs and PIA, a workshop was organised to co-design the household survey questionnaire with persons with disabilities. The format of a co-design workshop was adopted to design solutions with the target beneficiaries most simply and effectively. The workshop also enabled equal participation and equal decision-making  ‘on’ ‘for’ and ‘with’ persons with disabilities. In the workshop, participants reviewed the draft questionnaire to measure their relevance to their lived experiences and realities. This household questionnaire was then used to collect disaggregated citizen-centric data from households in Varanasi, for which a ward was selected with the highest number and types of disabilities upon liaising with the ward’s local leaders, and government officials. Using stratified random sampling, the households within the ward were selected to eliminate biases in the data. While collecting primary data, field experts also noted down their observations of the respondents’ environment.

Once the data collection was completed, analysis of the data collected was done to create logical narratives out of the raw data. These data were interpreted and visualised in qualitative and quantitative formats using various research and analysis tools. As part of the data analysis, a Disability Inclusive City Profile was designed. The profile consisted of key highlights of the city concerning basic and essential services for persons with disabilities. This also included key information for city officials to design and implement policies for the inclusion of persons with disabilities.

In conclusion, a dissemination workshop will be organised as the final process of the participatory data collection for the disability-inclusive city. In the workshop, the findings and learnings from the workshop will be shared and discussed with all city stakeholders. The workshop will also be crucial to validate the findings and provide recommendations for city officials to work on improving services for vulnerable communities, especially persons with disabilities. Here, representations from the government, civil societies and organisations working with persons with disabilities, experts,  persons with disabilities and organisations working with disability and other private players will be most crucially invited to ensure that the entire service delivery ecosystem is briefed and onboarded for this initiative. Most importantly, the dissemination workshop will help to conclude this initiative of building the research together and actioning the findings from the participatory data collection.

It is imperative to highlight that, while the above paragraphs depict the GUIDE methodology, the approach/steps in disability data collection are subjected to regional, cultural, population and other parameters in consideration. In the next blog, we will discuss in detail the expert and city stakeholders' consultation conducted under the GUIDE initiative to strengthen the participatory data collection process.



Authors: Eunsong Kim, Gender Equality and Social Inclusion Specialist, Chief of SHS Section, UNESCO and  Abhisikha Das, Program Associate, NIUA


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