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The international development data revolution

Pauline Thivillier, March 2014

It’s about time data becomes one of the defining issues on the development agenda

People with disabilities are not benefitting nearly enough from the Millennium Development Goals (MDGs) and are currently excluded from international development plans.

As the first ever World Disability Report found that people with disabilities are likely to make up at least 15 per cent of the poorest communities on the planet, ensuring we can measure their inclusion in development programmes is essential.

From the little data that is currently available we know that people with disabilities are missing out. Sightsavers and other groups have long recognised there is a need for more detailed analysis if we are to effectively target people with disabilities. Without this data we can’t determine the impact programmes are having on this group of people. We’re also prevented from being able to identify barriers and put in place the necessary changes. Ultimately, this lack of evidence limits advocacy efforts for the inclusion and human rights of people with disabilities in all areas of policymaking.

I think it’s about time data becomes one of the defining issues on the development agenda.

Lobbying helped result in the UN High-Level Panel report on the post-2015 framework, recognising the need to measure development programmes for specific marginalised groups – including people with disabilities. It stated that targets ‘will only be considered achieved if they are met for all relevant income and social groups’.

Even though there have been attempts to use a series of internationally agreed questions on disability, it’s fair to say that there is currently no golden approach to data collection on disability. I believe that if we’re to ensure development programmes are equitable and accessible to all, we need to address this data gap.

What is Sightsavers doing about it?

Most organisations working with people with disabilities are facing these same problems, so here at Sightsavers we want to help find a solution.

I’m excited to announce the launch of a pilot project to disaggregate data by disability using a selection of our projects in Africa and India. At first glance, this might sound like a dry topic, but I think it’s a crucial first step to ensuring that people with disabilities benefit equally from development.

We’ve decided to collect data on disability using the Washington Group (WG) short set of questions. The questionnaire has already been tested and covers six functional domains or basic actions: seeing, hearing, walking, cognition, self-care and communication. The project will be delivered in collaboration by teams from across the organisation – policy, research, programmes, and monitoring and evaluation. Having a multi-disciplinary project team provides us with a good balance of views and a bag of tricks we can draw from.

I know this is a challenging and difficult project and we’ve given ourselves a lot of work to do. But the impact it could have is huge.

Through this blog, we’ll share successes, failures and challenges encountered (I’m sure there will be a few). I hope this will provide concrete and useful examples on how (and perhaps how not) to disaggregate data by disability.

In the next instalment, we’ll be able to update you on the specific countries and projects we’ll be focussing on. We’d also love to hear from you about your experience in this area – email your thoughts to me at [email protected]. We’re really keen to open up debate and discussion on disability disaggregation with all of you!

To find out more about why improved disability data gathering and analysis mechanisms are critical to the post-2015 framework, take a look at our equality briefing.

By Pauline Thivillier, monitoring officer at Sightsavers

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