Model Disability Survey
Article 31 of the United Nation Convention on the Rights of Persons with Disabilities (UNCRPD) mandates that ratifying State Parties "collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention". Conceptualizations and approaches to measuring disability are different across countries, perhaps the reason why disability prevalence rates vary widely. While there considerable effort is being made to improve disability data in many countries, there is no standardized survey instrument that makes it possible: (i) to collect comprehensive, comparable and relevant information that helps countries construct a complete picture of disability; and (ii) to meet national obligation to monitor the implementation of the provisions of the CRPD. Having this in mind the development of a Model Disability Survey (MDS) was initiated by the World Health Organization (WHO) and the World Bank (WB).
The MDS is based on the decision to evolve beyond the traditional disability data collection strategy and ask people - not previously identified in terms of the health conditions - what they do, or do not do, in their lives. This novelty makes it a relevant and promising tool for monitoring the implementation of the CRPD.
In Phase One of the MDS project a review of existing health and disability surveys was carried out and a web-based repository constructed. Following pre-defined inclusion criteria, surveys were selected and their psychometric properties analysed using an Item Response Theory approach and Rasch models. Based on this analysis, a first draft of the MDS was proposed, presented at an Expert Meeting, and revised taking expert feedback into account.
In Phase Two the Alpha Version-a cognitive testing lead by the University of Michigan in collaboration with the US National Center for Health Statistics and the LMU-was performed. The updated version of the MDS was implemented in a pilot study.
In Phase Three the final version of the MDS was implemented within National Disability Surveys, with relevant technical support from the WHO.
Prof. Dr. Alarcos Cieza, MPH (for WHO)
Dr. Carla Sabariego, MPH (project leader)
Dr. Michaela Coenen, MPH