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Lack of research into the effectiveness of services for people with disabilities is fuelling government inaction, leaving many in poverty, writes Ruth Douglas
If policymakers want to weigh up the effectiveness of interventions for malaria, HIV or maternal health, there is no shortage of available scientific evidence. But when it comes to disabilities, there is a dearth of data.
The prevalence of disabilities is already well covered, even if figures remain disputed. The World Health Organization (WHO) puts the number of people living with a disability at an estimated 1 billion — 15 per cent of the world’s population — with 80 per cent of these in low- and middle-income countries.
But what is harder to establish is the availability and effectiveness of interventions aimed at improving the lives of this marginalised group, who can face insuperable barriers to full participation in society and disproportionate levels of poverty.
“There’s loads and loads of data about people falling behind but what we don’t really know is what the best strategies are to deal with it,”
Hannah Kuper, director of the London School of Hygiene and Tropical Medicine’s International Centre for Evidence in Disability
“There’s loads and loads of data about people falling behind but what we don’t really know is what the best strategies are to deal with it,” says Hannah Kuper, director of the International Centre for Evidence in Disability, a research group at the London School of Hygiene and Tropical Medicine (LSHTM).
In an effort to redress this, Kuper and her colleagues have produced an “evidence and gap map”, supported by Britain’s Department for International Development (DfID), of studies on the effectiveness of interventions to improve the lives of people with disabilities in low- and middle-income countries.
“We found about 100 studies, but there are quite big problems with them. The first is that almost all of them focus on health so it’s not really about disability-inclusive development,” says Kuper, explaining that the map looked at research in the areas of health, education, livelihoods, social inclusion and empowerment.
“The second problem was that almost all of the studies were really poor quality. Often they were really small and had lots of methodological problems.”
Where data was available, it was concentrated in a handful of countries: India, China, South Africa, Iran and Turkey, while in other countries there was none.
The result, believes Kuper, is that investment and decision-making around disabilities is operating in an “evidence-free zone”. Moreover, those who are ignoring the problem are being “let off the hook”.
With a £7 million investment from DfID, the LSHTM is now working on 10 impact evaluations to try to fill some of these evidence gaps and find out what works when it comes to tackling disabilities in low-resource settings. Also in the pipeline is an “evidence portal” where policymakers and decision-makers can find the best available evidence on different areas relating to disabilities.
Daniel Mont, co-director of the Washington-based Center for Inclusive Policy, argues that what it is lacking is not the data itself, but analysis of it.
“The good news is, there’s a lot more attention and effort now on trying to collect good disabilities data… to monitor programmes, to evaluate their progress as they go along,” he says.
“The bad news is we have a long way to go. Although the amount of data is starting to increase, what’s lagging is the analysis — people actually using the data.”
Like many experts in the field, he stresses the importance of disabilities research being incorporated into research in other fields, with increased standardisation to ensure that the data is comparable.
“It’s not like we want everyone to be doing disability research. We want everyone doing research to realise that a significant percentage of the people they’re doing research on have disabilities, and that should be accounted for,” he explains.
Kuper adds: “As a disability movement we can only do so much. Other large-scale trials looking at different topics need to start including measures of disability and ask, ‘does this also work for people with disabilities?’”
Disability and the SDGs
The UN’s 2030 Agenda for Sustainable Development pledges to “leave no one behind”, and recognises disability as a cross-cutting issue, to be considered in the implementation of all of its goals.
A flagship UN report on disabilities and development in 2018 states: “The lack of data and research on the situation of persons with disabilities severely constrains the international community from monitoring the situation of children, youths and adults with disabilities.” It calls for data on areas such as poverty and hunger to be disaggregated to include disabilities.
Lorraine Wapling, an inclusive development consultant and researcher in disability and development who is carrying out research on disability and learning among girls, believes that disaggregated data is crucial.
“If we look at education, it is common to find data that is disaggregated by gender, age and possibly location,” she explains. This, she says, helps to highlight any differences in learning outcomes based on these variables, and ensure programmes are effective for all. However, she adds: “What is much rarer is to find this kind of data disaggregated by disability status, even though disability is a universal characteristic like gender or age.”
In the case of DfID’s Girls Education Challenge Programme, aimed at improving learning outcomes for marginalised girls in developing countries, data was collected using the Washington Group set of questions, which identifies disabilities. “The impact this has had on raising the profile of girls with disabilities in mainstream education programmes has been considerable because almost all projects found they had disabled girls in their cohorts,” says Wapling. “Projects responded really positively, by introducing activities and interventions to help remove barriers to learning.”
However, Wapling, who is profoundly deaf herself, believes that the wider lack of this kind of evidence “simply reinforces the invisibility that people with disabilities can experience”.
Funding is clearly a major issue when it comes to tackling the evidence gap, with research into disabilities traditionally attracting far less financial backing than other areas of health and development research.
“The big traditional funders have not been funding disability,” says Kuper, and it has been “falling through the cracks”.
“I think that those kind of agencies embracing disability as part of their agenda is really important,” she adds.Ola Abualghaib, manager of the technical secretariat of the UN Partnership to Promote the Rights of Persons with Disabilities, agrees that investment has been an obstacle to progress and says the major actors in development must be “more sensitised” to disabilities. The partnership aims to support governments in implementing the Convention on the Rights of Persons with Disabilities, established by the UN in 2006.
“It is evident that country governments are still struggling to understand how can they really put all those commitments into practice,” says Abualghaib, who was left paralysed at the age of 14 by surgery to remove a tumour in her spine. “There is a bit more political will — 80 countries have signed and ratified the convention —…but change has been very slow.”
It is not that governments do not want to act, she adds, but “even governments that want to do it are still lacking the evidence that is needed to make that transformative change”.