Counting disability: global and national estimation.

PURPOSE: How many people with disabilities are in the world? How is disability defined? How can we measure disability in an accurate and comparable way? These are some of the key questions which the recently published World Bank/WHO World Report on Disability (WRD) addresses. METHOD: Multiple data sources and methods were used by WHO and the World Bank to estimate a global figure, with the ICF as the underlying data standard. Key international data sources were the World Health Survey of 2002-2004 and the 2004 updates from the Global Burden of Disease study. The World Report on Disability also includes a compilation of country-reported prevalence from census and surveys. This paper presents and discusses key findings of the Irish National Disability Survey (2006) to illustrate the value of the ICF framework for disability statistics and most especially the environmental factors component. RESULTS: The World Report estimates that globally one billion people or 15% of the world's population experience disabilities. Between 110-190 million people (2% of the world's population) experience severe or extreme difficulties in functioning. Definitions and measures of disability vary widely across countries. The Irish Disability Survey shows the substantial impact of environmental factors on people's functioning. For example, attitudes, and the presence or absence of facilitating equipment, support services, flexible working arrangements and transport significantly affect participation of people with disabilities in Irish society. CONCLUSIONS: To improve the quality of disability information, the World Report recommends the use of a common definition and concepts of disability based on WHO's International Classification of Functioning Disability and Health (ICF). Furthermore, disability measurement needs to apply a multidimensional approach, in particular, measuring disability in terms of the level of difficulty a person is experiencing in multiple areas of life, rather than head counting severe impairment types in a dichotomous way. Environmental factors have significant effects on individual functioning and should be considered as an integral part in disability measurement.

Using the ICF in Ireland.

This paper reflects on the use of ICF in Ireland, taking as a case study the experience of the first National Disability Survey (NDS). There were four clear effects in Ireland of using ICF as a framework for the NDS: a) that a broader range of people with disabilities was encompassed; b) that the environmental factors included from the ICF were comprehensive and policy relevant; c) that both barriers and facilitators were incorporated into the model; and d) that a focus on research ethics was encouraged. Some general conclusions regarding the benefits and limitations of ICF based on this experience are also drawn.

Towards comparability of data: using the ICF to map the contrasting definitions of disability in Irish surveys and census, 2000-2006.

PURPOSE: To examine how disability was measured and understood within Irish data sources 2000-2006, using the International Classification of Functioning, Disability and Health (ICF) as a guiding framework for a more comprehensive and transformative definition of disability. METHOD: During the EU-funded Measuring Health and Disability in Europe (MHADIE) project (2003-2006), an audit of data sources which included a disability identifier question was conducted. Thirty Irish data sources were examined in total. An overview of these data sources was provided in 'Disability Data Sources in Ireland' (National Disability Authority, unpublished, 2007). Using guidelines developed by Cieza et al. (J Rehabil Med 2002;34:205-210, J Rehabil Med 2002;27:212-218) five data sources were selected for detailed examination and were mapped to the ICF. These were the census (2006), National Disability Survey (2006), National Physical and Sensory Disability Database (2006), Survey of Lifestyles, Attitudes and Nutrition (2002), Euro Student Survey (2003). Subsequent work conducted after the completion of the MHADIE project added to the findings. RESULTS AND CONCLUSIONS: The environmental dimension of disability dominated the data collection exercises which used the ICF as their framework-for the National Disability Survey (NDS) and the National Physical and Sensory Disability Database (NPSDD). Both also had strong focus on activity and participation. When mapped on to the ICF, the data sources which preceded the ICF or did not use it, are shown to focus more on activity and participation data than any other ICF component. Across the five selected data sources, limited information was collected on body function and body structure.

Integrating research into policy planning: MHADIE policy recommendations.

MHADIE project (Measuring Health and Disability in Europe: Supporting policy development) aimed at developing realistic, evidence-based and effective national policies for persons with disabilities. A preliminary step towards this goal was the demonstration on the feasibility of employing the ICF in clinical, educational and statistical fields, which corresponds to the recognised need to enhance the European Union's capacity of analysis of disability, as highlighted in its Disability Action Plan 2006-2007. The ultimate outcome of the project is the production of 13 policy recommendations, dealing with statistics clinical and educational areas, and four general policy recommendations focusing on: (a) the need of coordinating and integrating disability conceptualization at all policy levels and across sectors; (b) the need of conducting longitudinal cohort studies which include children aged 0-6; (c) the need of reviewing transportation policies in light of the requirements of persons with disabilities; (d) the need of reviewing all disability policies to emphasise and support the role of the family, which is a consistent and substantial environmental facilitator in the lives of persons with disabilities.