Model Disability Survey (MDS)
The motivation for the Model Disability Survey project of the World Health Organisation and the World Bank arose from the recognition, clearly enunciated in the 2012 joint Report on Disability, that there is a worldwide need to collect comprehensive, comparable and relevant disability information that countries can use with confidence. In addition, the United Nations Convention on the Rights of Persons with Disabilities mandates that ratifying States Parties "collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention".
Disability is a complex and multidimensional experience that poses many challenges for description and measurement. Data about all dimensions of disability – information about impairments, activity limitations, participation restrictions, and the environmental factors that facilitate or hinder full participation – are essential to understand how disability plays out in people's lives. It is necessary to examine the entirety of the disability experience in order to understand the impact of disability on people's lives and determine the appropriate response.
The development of the Model Disability Survey, as a result, is grounded in the choice to evolve beyond the traditional disability data collection strategy of defining a population of individuals who are labelled as 'disabled' in terms of the health conditions or body dysfunctions they have, and then probe the difficulties they have as a consequence. The Model Disability Survey asks people – not previously identified in terms of the health conditions – what they do, or do not do, in their lives. These kinds of questions concern how people actually function in multiple domains given the environmental barriers and facilitators that constitute their real life situation.
This approach is revolutionary and poses substantial challenges. First of all, we are not used to conducting 'disability surveys' that do not begin by identifying people with disabilities in terms of their impairments or health problems, and then asking them questions about their limitations. In addition, respondents need to be guided to consistently think, not about what they cannot do because they are paralysed, blind or depressed, but about what their lives are like. Finally, disability data on this approach must be statistically derived from the data collected and not based on predetermined impairments or medical categories.
In preparation for an expert consensus conference to finalize questions for a Model Disability Survey that is currently undergoing cognitive testing, the following steps have been taken: 1) An extensive search was used to identify disability and population health surveys from countries around the world and a subset of surveys for subsequent analysis were identified; 2) A qualitative content analysis of the questions of those surveys was performed by mapping them to the International Classification of Functioning Disability and Health (ICF). The information from these two completed steps is available in a web-based repository at http://disabilitysurvey.checkdesign.de/
The Model Disability Survey is currently being cognitively tested in Malawi and in the USA, and a first pilot study is taking place soon in Cambodia.