As we countdown to 2015, the target date set by the Millennium Development Goals, opinions and debates about the future reference framework for the fight against poverty have multiplied. The potential of data, through collecting more and better quality information to document the lives and the needs of some of the most marginalized groups that the MDGs might have failed to capture, has attracted increasing attention amongst both policy-makers and practitioners.
In May last year, recommendations from the High-level Panel on the Post-2015 Development Agenda included a call for improved data and statistics to strengthen accountability and evidence-based decision-making, prompting observers to ask whether 2013 could be the year of the data revolution? Last month, UNICEF issued its annual State of the World’s Children report, entitled “Every Child counts” and dedicated it to the importance of data in “revealing disparities and advancing children’s rights”.
Children with disabilities, estimated to be 150 million worldwide (World Report on Disability), are one of the groups showing huge disparities in the realization of children’s rights, including participation and education. Studies show that children with disabilities are more likely to drop out of school than other vulnerable groups even in countries with high primary school enrolment rates. They are also more likely to suffer multi-dimensional poverty. Yet, very little data exists on the prevalence of disability amongst children in developing countries and, although MDGs have encouraged the collection of numbers and figures to measure progress against various targets and indicators, the absence of reference to disability has critically limited incentives for data disaggregation and therefore, the opportunity of reaching out to the most marginalized children and youths.
Jubilee Action’s project “Education, Equality and Empowerment” is revealing how important and pivotal collecting data on children with disabilities can be. In March 2013, as part of our project aimed at advocating for the rights of children and youth with impairments and supporting those with hearing and communication impairments to gain access to education, we initiated an extensive community mapping of the Musanze District in Northern Rwanda. Gathering information about the prevalence of children and youths with disabilities has allowed us to generate evidence of the needs and the gaps in service delivery, enabling us to advocate for improved policies and increased support accordingly. For example, our findings revealed 8,117 people with disabilities, 841 of whom have a hearing or communication impairments. Our data has already attracted the Starkey Foundation mission to undertake hearing assessments for over 500 people in Musanze District and we hope that this is just the start of things to come.
By involving children and their families in our community mapping we have also given them a voice to talk about their experience. Meeting with our specialist team means that families can discuss and learn more about their children’s disability for the very first time. Children have also had the opportunity to meet and play with their peers with similar or other impairments, challenging confusions and misconceptions which often result in the strong stigma attached to children with disabilities; a recent blog written by Segerien Donner, a speech therapist supporting our programme describes her experience in the field. Our community mapping aims to address this issue by also including data on subjective indicators like the stigma children and families experience and/or anticipate. For example, we found that 45.9% of the children with disabilities had no access to education despite 74% stating there was a school nearby; evidence which strongly supports the need to break down stigma through community-based advocacy activities and better equip schools to provide inclusive education.
We believe that data collection can be a powerful tool if it goes beyond numbers and figures and make every child really count. Read our full report here. Our summary and recommendations can also be found here.