Chapter 2 Obtaining an Accurate Picture of Disability Prevalence and Impact
At present, only a partial picture of the prevalence and impact of disability in Ireland is available. In contrast to many other rich countries – and to some at much lower levels of income – we do not have the statistical base required. As a consequence, policy in the area is inadequately informed, service planning is based on partial information about needs, and the effectiveness of interventions aimed at meeting those needs and facilitating full participation by people with disabilities cannot be properly assessed.
The Commission on the Status of People with Disabilities in its 1996 Report placed considerable emphasis on the “silence of relevant official statistics” and in particular on the fact that no comprehensive statistics are available on the prevalence of disability among adults and children in Ireland. The Commission recommended that information about disability be included in the Census of Population, and that the Central Statistics Office should carry out a survey of the extent of disability and establish a system to ensure relevant data is regularly updated. While there have been some significant improvements in data since then, these fall well short of the comprehensive statistical base which the Commission saw as essential.
It is worth emphasising at the outset that the statistical apparatus envisaged by the Commission, and already in place in some countries, does not simply amount to “counting heads” – being able to say how many people are affected by different types of disabilities. This is indeed one component, and it is hard to see how service planning can be done properly without such information. However, the statistical system must also aim to capture the circumstances in which people with disability live, the context in which disability is experienced, the impact it has on people’s lives, and the key environmental factors influencing that impact. If its aims are broadly rather than narrowly conceived, the statistical system can produce regular, reliable and comprehensive survey data on disability prevalence and impact which, together with research based on those data, have the potential to significantly improve our understanding of disability and our societal response.
In a background paper for the Commission, Dorothy Watson (1996) from the ESRI examined the statistical information available on people with disabilities in Ireland, and pointed to the deficiencies in that information as a basis on which to establish prevalence. While there have been some improvements since then, the main sources of information regularly available still relate to people identified on the basis of service use, receipt of disability-related social welfare payments, or labour force status. These sources each have different but serious limitations.
Statistics on service use are obviously very important, but will neither capture everyone with a disability nor give a comprehensive picture of their situation (The Health Research Board’s National Intellectual Disability and Physical and Sensory Disability Databases face the same problem, among others, since those included are identified on the basis of information available to service providers.) Similarly, receipt of disability-related social welfare payments is subject to various entitlement conditions with respect to labour force status, social insurance and/or income, which mean that many people with disabilities will not be eligible – and again, even for those covered little is known beyond the simple fact of receipt. The regular information collected by the CSO in the Quarterly National Household Survey (QNHS) and in the Census of Population identifies those unable to work due to sickness or disability, but this does not distinguish sickness from disability, does not include those with a disability who are at work, and only relates to those of working age. In addition, none of these sources provide information about living standards, or the broader circumstances and environment in which the individuals affected and their household live.
There have been some valuable recent additions to the information available, notably in the 2002 Census and in a special module included with the QNHS in 2002. The 2002 Census included two questions relating to disability, the first on whether the person was affected by a long-lasting limiting condition and the second about difficulty in doing certain activities due to a physical, mental or emotional condition lasting 6 months or more. The results have just been published, and provide the first aggregate figures on overall disability prevalence for the Irish population as a whole. They show, most importantly, that 8.3% of all persons are classified as having a disability, in terms of the specific questions employed in the Census. This clearly represents a significant step forward in terms of the information base. However, the information sought about the type of longstanding health problem or disability and how it affects functioning is necessarily very limited, compared with what could be obtained in a specially-designed in-depth instrument dedicated to disability, and information about the social and environmental context in which disability is experienced is not available.
The QNHS carried out in the second quarter of 2002 included a special module on disability. This focused on whether people had any long-standing health problem or disability, the nature of that problem/disability, and the labour force status of those affected. Among the most important results are that about 10% of persons aged 15 to 64 indicated that they had such a longstanding health problem or disability, and that about 40% of these were in employment. This module provides very valuable information about persons of working age, and its value is enhanced by the fact that similar information was gathered at about the same time in other EU countries, providing scope for seeing the situation in Ireland in a comparative perspective. In addition to the figures from the module published by the CSO, further analysis of the micro-data should be very helpful in understanding the relationships between disability and labour force participation. The data are however limited to those of working age, and to labour force participation rather than broader living standards, circumstances and contexts. The information sought about the type of longstanding health problem or disability and how it affects functioning is also once again limited.
Some other survey-based information is available from the Living in Ireland Survey, the Irish component of the European Community Household Panel, conducted by the ESRI annually from 1994 to 2001. This asked respondents inter alia whether they had any chronic physical or mental health problem, illness or disability, and if so what was the nature of this illness or disability, and whether it hampers them in their daily activities. This is particularly useful because the wealth of other information in the survey then provides a window into the relationship between disability and not only labour force participation but also income, living standards, and social participation. However, the information on disability is clearly quite limited and is available only for adults, and the survey does not address the perceived impact of disability, the use of and need for services, or environmental factors affecting the impact of disability on daily life.
In short, the recommendation of the Commission on the Status of People with Disabilities that information about disability be included in the Census of Population has now been implemented, but the need they highlighted for a specially-designed survey on disability, and the establishment of a system to ensure such data is regularly updated, remains. (Information obtained in a future Census could serve as the basis for identification of people to be included in such a survey – an approach that has been adopted in some other countries, notably Canada and Australia – or alternative “screening” approaches could be employed, as discussed below) . It would aim first of all to provide a comprehensive picture of the prevalence of disability by degree of severity and type of disability, going well beyond the aggregate estimates currently available. As importantly, though, it would in addition probe the labour force status, financial circumstances and living standards of those affected by disability, their use of and need for health, education and personal social services, their participation in different areas of life, and the contextual factors and constraints which impact on their daily lives. This would provide the basis for a rounded picture of both the prevalence of disability and its impact in Irish society as it is currently constructed.