Government policymaking is typically based on data that does not adequately represent all communities and their diverse needs.
Relevant, timely, reliable, and disaggregated (preferably real-time) data is crucial for developing need-based and appropriate response and recovery measures during emergency situations.
Through community-driven data and other forms of inclusive data, CSOs and organizations of persons with disabilities help bring innovative perspectives on certain populations and their needs, issues, and trends.
By The International Civil Society Centre, with support from Raj Kumar Gandharba, Global Policy Lead, VSO International
As the COVID-19 pandemic continues to deepen inequalities around the globe and threaten the overall progress of the Agenda 2030 for Sustainable Development, this year’s High-level Political Forum (HLPF) brought together contributors from diverse backgrounds and geographies to highlight different impacts of the COVID-19 pandemic across all SDGs and reflect on the actions required to build back better from the pandemic.
Leave No One Behind Partnership at the 2022 HLPF
On 12 July, The International Civil Society Centre (The Centre) co-hosted a virtual side event at the 2022 HLPF together with the German Development Agency (GIZ), with the support of the UN Statistics Division (UNSD), to explore inclusive data practices in communities (which are mostly overlooked in high-level policy discourses) as a strategic tool for building back better after the pandemic. The event was moderated by Marthe Bekele, Development Initiatives.
The COVID-19 responses in many countries have overlooked the situation of marginalized communities, including but not limited to people with disability, women, girls, refugees, LGBTQIA+, and others. As a consequence, the chosen mitigation measures have often not reached these communities, or even worse: they have further exacerbated social and economic inequality and the exclusion of these groups. Part of the reason for this negligence is that government policymaking is typically based on data that does not adequately represent all communities and their diverse needs. Relevant, timely, reliable, and disaggregated (preferably real-time) data is crucial for developing need-based and appropriate response and recovery measures during emergency situations.
Peter Koblowsky, Senior Partnership Manager, The International Civil Society Centre’s Leave No One Behind (LNOB) partnership, and Thomas Ongolo, Regional Advisor for Africa, GIZ, commenced the session by sharing key insights from their organizations’ work around inclusive data sources like community-driven data (CDD), including disability data.
The introduction was followed by a welcome remark by Yongyi Min, Chief of SDG Monitoring, UNSD. Min emphasized how COVID-19 has impacted data collection around the world, declining data on SDGs by over 20% in 2020. Against this backdrop, she highlighted the key role of inclusive data sources like CDD and the importance of the involvement of Community Based Organizations (CBOs), Civil Society Organizations (CSOs), government, community members, and other stakeholders in all stages of SDG monitoring and review for building back better.
National Case Studies
Two national case studies were presented, one from Kenya and the other from Rwanda. Sally Nduta, LNOB Kenya, and CEO at United Disabled Persons of Kenya (UDPK), spoke about the meaningful participation of organizations of persons with disabilities (OPDs) in data processes. Nduta mentioned their advocacy for more inclusive, reliable, and timely data on Persons with Disability (PWD) through the disability movement in Kenya that has allowed UDPK and LNOB Kenya to work in partnership with key stakeholders to ensure that PWD are included in official statistics and policy reforms and that budget and disability-related interventions are informed by data. Two million Kenyans with disability were expected to vote in the national election in 2022, which is a sizable segment of the population. Against this backdrop, UDPK and partners were able to leverage disaggregated disability data to advocate for budget allocation on voter education, push for disability-sensitive content, and demand for better accessibility for PWD in the election.
Marcel Nkurayija, National Council of Persons with Disabilities (NCPWD), Rwanda, echoed how the lack of inclusive data, such as disability data, perpetuates lack of support for PWD who are most in need. He presented the Disability Management Information System (DMIS) which was developed to fill the existing data and knowledge gap on PWD. The DMIS provides on demand identification and registry of PWD, real-time interactive dashboards and maps on indicators, grievances and appeal system, comparison with census data on different levels, and case management support to those who are in need.
Our panel comprised development professionals from a broad spectrum of disciplines who have worked extensively with inclusive data. Fried Lammerink, GIZ Development Advisor working for the Government of Rwanda at the National Council of Persons with Disabilities (NCPD), shared his experiences with disability data collection at both OPD and government level in Rwanda and Cambodia. Lammerink emphasized that disability data collected by PWD ensures that their individual needs and barriers are properly reflected, which allows governments in countries like Rwanda with limited financial capacities to provide solutions and develop policies that favor the individuals and groups that are most in need.
Kam Morshed, Senior Director, BRAC, shared reflections from the LNOB Bangladesh Platform. He explained how their community scorecards project conducted during the COVID-19 lockdown has helped provide to the policy makers experience-oriented pictures of the struggles and exclusion faced by more than 12 marginalized communities in Bangladesh. The exercise resulted in the proposal of a set of action plans to the government, NGOs and other stakeholders to incorporate CDD into the national statistical system and UNSD database.
Jennifer Madans, founding member and Chair, Steering Committee, Washington Group on Disability Statistics, and Senior Associate, Center for Inclusive Policy, suggested using a common conceptual framework and standard set of definitions for data collection where possible. Such a standardized approach, she said, can help break down data silos and create a harmonized data infrastructure everyone can build upon.
Mohammed Loufty, Stakeholder Group of Persons with Disabilities, highlighted the need for an intersectional approach to collect, analyze, and disseminate inclusive data, including CDD. He mentioned that the CDD generated through qualitative research led by his group during the pandemic highlights that OPDs played a meaningful role in the data ecosystem. OPDs and NGOs supported their members and communities when the government did not and became sources of vital information, he said. Learning from these findings is essential for addressing response and recovery plans in an inclusive manner for future emergencies.
The insights from the speakers and panelists not only reaffirmed the fact that there is a massive lack of high-quality and relevant data on PWD and other marginalized groups, but the discussions further highlighted the important role OPDs and other CSOs can play in filling the existing data gaps, especially during emergency situations like COVID-19. Through CDD and other forms of inclusive data, CSOs and OPDs help bring innovative perspectives on certain populations and their needs, issues, and trends.
The CDD generation process enables marginalized communities and groups to engage directly with the states, governments, and other service providers, which empowers the communities to advocate for their needs and demand improved services at grassroots level. This has beneficial impacts on their emotional and psychosocial wellbeing, especially during crisis situations. Likewise, engaging with community members and listening to their stories, experiences, and needs could help service providers to deliver a better and more effective response to the pandemic.
The discussion also shed light on the importance of working in partnership with multi-stakeholder and sectoral partners, where communities’ stake is very important, and of building partnerships to achieve this goal. Like Nduta mentioned, we all hold a piece of the puzzle. Working together with key government ministries, statistical divisions, UN agencies, and development actors and engaging CSOs and communities themselves in data collection offers a promising way to fill data gaps, break data silos, and build better and more diverse data infrastructures for broad-based and inclusive development.
View the recording of this session here.
A version of this article was first published on the LNOB Partnership website.