The inclusion of persons with disabilities in coronavirus data collection efforts needs to be business as usual

Dr Mark Carew, Senior Researcher at Leonard Cheshire, explores the importance of quality data collection in assessing the impact of coronavirus on the disabled community.

Globally, things are not business as usual. Coronavirus has changed the way society and all of its institutions function, particularly amidst quarantine and lockdown rules that require people to stay at home in order to protect themselves — and others — against the disease. At the time of writing (mid-May), some of the worst affected countries within Europe are cautiously taking the first steps in lifting lockdown restrictions. Or at least raising this as a possibility soon. However, there remains considerable concern about a second wave of infection after restrictions are lifted, with talk of a “new normal” guiding how people live, work and learn, until such a time when a COVID’19 vaccine can be rolled out. Low- and Middle-Income Countries (LMICs) are at particular risk of a devastating outbreak because of a weaker health infrastructure, poorer urban planning, and less comprehensive waste disposal systems, among other factors. The economic impact of coronavirus is also pushing millions more into poverty globally, with the most marginalised individuals the most hard-hit.

Disability inclusive data and evidence during COVID’19

The disability and development sector has been working to support the world’s one billion persons with disabilities during COVID ’19. Reports and briefings from NGO’s, academic centres and international organisations like the International Labour Organisation (ILO) are highlighting that persons with disabilities are at risk of being left behind during global COVID’19 action and its aftermath. To avoid this, a disability inclusive COVID’19 response is needed. One key facet of this response is collecting data on the impact of coronavirus disaggregated by disability (as well as other characteristics such as age, gender & ethnicity). This can be achieved using robust measures such as the Washington Group Short Set of questions. Collecting disability data is important to a disability inclusive COVID’19 response because it allows for accurate tracking and monitoring of progress towards the inclusion of persons with disabilities in COVID’19 action. This includes highlighting gaps where inclusion should be happening, but is not. Furthermore, it is not simply the collection of this data that promotes the full participation of persons with disabilities in a COVID’19 response — ensuring that the data obtained are of high quality (i.e. the methodology & questions asked) is crucial as well.

Another key facet of disability inclusive COVID’19 action is to ensure that persons with disabilities are fully included in shaping responses and in all key decision-making stemming from the implementation of these responses. This includes when data and evidence are collected about disability and coronavirus. For data collection efforts to be inclusive, persons with disabilities must be involved not only as participants, but also as partners and expert advisors in planning, shaping and collecting data. As well as how data is interpreted and used. A good example of this inclusive approach to disability data can be found in some of Leonard Cheshire’s recent work on citizen-led data generation with youth with disabilities.

Including persons with disabilities in all stages of evidence generation ultimately helps to ensure that data collection methods are accessible so that all persons with disabilities have opportunities to participate. It also ensures that the data collected accurately represents and communicates the views and experiences of persons with disabilities. So, in terms of data and evidence, a disability inclusive COVID’19 response is broader than only the collection of good quality disability data. It also necessitates the full and active participation of persons with disabilities across the lifecycle of the data collection activity.

There is currently an urgency for quality data globally like no event in recent memory. Good quality data on coronavirus — without putting too fine a point on it — will save lives. For coronavirus data and evidence to be disability inclusive however, it is important that not only that good quality disability data is collected, but that COVID’19 data collection efforts fully include persons with disabilities throughout. These are not mere asks but are consistent with the human rights approach to disability set out in the United Nations Convention on the Rights of Persons with Disabilities.

Ensuring the participation of persons with disabilities in COVID data collection efforts

This challenge comes at a time when routine practices in the planning and implementation of data collection efforts are disrupted due to COVID’19. For example, ensuring the participation and empowerment of persons with disabilities through data collection activities is frequently supported by using participatory research methods that entail face to face interaction with participants. Mechanisms like workshops and steering/advisory group meetings involving persons with disabilities also help ensure disability representation in the planning and interpretation of data. In a time of restricted movement, such communication and activities may need to run via technology-based solutions.

However, a practical challenge is that many persons with disabilities, particularly in low- and middle-income countries often have poorer access to the appropriate technology needed for these solutions to reach them (e.g., internet-enabled devices for online data collection). In these contexts, the onus is on the planners of research to incorporate other strategies, for example, looking at ways to provide this technology to participants with disabilities and supplementing with other social distancing compliant approaches, such as phone-based or other offline data collection methods. Even where appropriate technology is put in place, accessibility needs to be ensured for all persons with disabilities. This requires making full use of accessibility features offered by technology (e.g., large font option in online surveys) as well as making sure offline inclusive practices (e.g., ensuring sign language interpreters are provided for workshops) are carried over during new approaches to research (e.g., web-based planning meetings).

Looking at the speed at which new data and evidence needs to be generated, and the inability to apply “business as usual” evidence generation practices, there is a danger that in a desire to collect rapid good quality data about coronavirus and disability, we inadvertently do this without the participation of those of us who are most crucial to shaping and guiding these data collection efforts. Persons with disabilities. Obtaining robust disability data is integral to an inclusive coronavirus response, but so is how we go about getting this data. Going forward, we must ensure that our data and evidence generation practices stay inclusive of persons with disabilities. Nothing about the world is business as usual right now. But the full participation of persons with disabilities in all areas of activity — including data collection — should be.

International commentary from Leonard Cheshire’s academic/research team. For more stories go to: https://www.leonardcheshire.org/our-impact/stories

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