The EU perspective on data collection and statistics on disability across European countries Lucian Agafitei Eurostat – unit F5 Education, health and social protection 5 October 2012 Workshop on data collection and statistics on disability in European countries

UN Convention on the Rights of Persons with Disabilities (UNCRPD) December 2006: adoption by the UN General Assembly March 2007: signature by the EU November 2009: adoption of a Council Decision for conclusion of the UNCRPD December 2010: completion by the EU of the procedure of conclusion of the Convention by depositing its instruments of formal confirmation with the UN Secretary General January 22, 2011: enter into force with respect to the EU March 2012: ratification by all EU Member States

UNCRPD  obligations for the Member States and the EU (Articles 31, 33 and 35): –to monitor and regularly report on its implementation –to collect statistical information on disability need to produce information on disability at EU level defined in accordance with the UNCRPD and the International Classification of Functioning, Disability and Health (ICF) 3 UN Convention on the Rights of Persons with Disabilities (UNCRPD)

European Disability Strategy ( ) Adopted on 15 November 2010 Comprehensive framework committing the Commission to empowerment of people with disabilities to enjoy their full rights, and to removing everyday barriers in life Builds on the UNCRPD and takes into account the experience of the Disability Action Plan ( )

European Disability Strategy ( ) Eight priority areas: 1.Accessibility: make goods and services accessible to people with disabilities and promote the market of assistive devices 2.Participation: ensure that people with disabilities enjoy all benefits of EU citizenship; remove barriers to equal participation in public life and leisure activities; promote the provision of quality community-based services 3.Equality: combat discrimination based on disability and promote equal opportunities 4.Employment : raise significantly the share of persons with disabilities working in the open labour market 5.Education and training: promote inclusive education and lifelong learning for students and pupils with disabilities 6.Social protection: promote decent living conditions, combat poverty and social exclusion 7.Health: promote equal access to health services and related facilities 8.External action: promote the rights of people with disabilities in the EU enlargement and international development programmes

Instruments for the implementation of the European Disability Strategy Statistics and data collection and monitoring: 1.Streamlining the information on disability collected through EU social surveys 2.Develop a specific survey on barriers for social integration of disabled people 3.Present a set of indicators to monitor their situation with reference to key Europe 2020 targets (education, employment and poverty reduction)

Constraints to the comparable measurement of disability across EU social surveys (1) Influenced by the understanding of disability Medical Biopsychosocial Social

Medical model of disability concepts and definitions based on the medical model resulted in the International Classification of Impairments, Disabilities and Handicaps (ICIDH) in 1980 disability regarded as a restriction or lack of ability to perform normal activities, which has resulted from the impairment of a structure or function of the body or mind

Biopsychosocial model of disability underpinned by the UNCRPD: Persons with disabilities include those who have long- term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others

Social model of disability The social model begins with society, not with an individual’s functional ability A key distinction made between impairment and disability: Impairment - long-term characteristics of an individual that affect their functioning and/or appearance Disability - the disadvantage, or restriction of activity and participation, caused by aspects of society which take little or no account of the needs of people with impairments

Constraints to the comparable measurement of disability across EU social surveys (2) Constrained by the focus or topic of survey carrying the questions Health Employment Income and Living Conditions Constrained by the number of questions permitted in the survey Limited number of questions Coverage of disability domains

Constraints to the comparable measurement of disability across EU social surveys (3) Constrained by the ease or difficulty of operationalising disability domains Walking and mobility, seeing, hearing Learning difficulties, affect, fatigue Constrained by what has been measured before Disrupt trend data

Data sources at EU level EU Statistics on Income and Living Conditions (EU-SILC) European Health Interview Survey (EHIS) Labour Force Survey ad hoc modules on employment of disabled people (LFS AHM) European Health and Social Integration Survey (EHSIS) - new

EU Statistics on Income and Living Conditions (EU-SILC) Annual survey Includes the Minimum European Health Module (MEHM)  2 single-question items on self-perceived health and chronic conditions + the Global Activity Limitations Indicator (GALI) question 14

GALI question satisfactorily reflects poor functioning and disability used for the calculation of the Healthy life years (HLY)

European Health Interview Survey (EHIS) First round ( ): implementation in 17 Member States + TR, CH, NO 4 modules: health status, health care, lifestyle and demo- socio-economic variables The health status module includes, inter alia, questions on difficulties in: basic activities (seeing, hearing, walking, stretching, etc.) more complex activities: Activities of Daily Living (personal care) Instrumental Activities of Daily Living (household care) Next round: 2014 with an EU legal basis 16

Labour Force Survey ad-hoc module on employment of disabled people Aim: to provide information on the situation on the labour market of disabled people and to compare it with the one of non disabled people Conducted in 2002 and 2011 Content (2011): –Health problems and difficulties in basic activities –Limitations in work caused by health problems/difficulties in basic activities (i.e. limitations in amount of work, in type of work, getting to/from work) –Special assistance needed or used by people with health problems/difficulties in basic activities –Limitations in work because of other reasons (personal/environmental)

2011 LFS AHM LFS AHM constraints (max. 11 variables; multiple answers not allowed): only barriers in the area of employment were investigated  the AHM provides information on the barriers to employment associated with health problems and/or difficulties in basic activities, and to other personal/environmental reasons  disabled persons (in employment) are those who declare that a health condition or disease or a difficulty in basic activities (such as seeing, hearing, bending, etc.) causes their limitation in work  other disability measure: disability = difficulties in carrying out basic activities

European Health and Social Integration Survey (EHSIS) June 2011 WG PH - 8. Disability statistics 19 Aim: to meet the needs for statistics on disability as defined by the UNCRPD and ICF Development: Implementation: all EU Member States + Iceland + Norway Year: 2012/2013 Call for tender

Questionnaire development Designing variables/questions which reflect the interactive nature of the current definition of disability => the questions are about the participation in different life areas => for those not participating or with limited participation the barriers are identified: Personal (health conditions, impairments) Environmental factors (finances, convenience, lack of assistive devices or personal help) Focus is on the key aspects of social integration based on policy needs Translation of the language of the ICF to common terms used in national surveys Having a coherent rather than a comprehensive set of questions

EHSIS: content of questionnaire –Eurostat core social variables (background variables common to all European social surveys) –Questions about general health and longstanding health problems (Minimum European Health Module, impairments, Activities of Daily Living - ADL, Instrumental Activities of Daily Living - IADL) –Questions on barriers in 10 life domains: Mobility Internet use Transport Social contact and support Accessibility to buildings Leisure pursuits Education and training Economic life Employment Attitudes and Behaviour

EHSIS – Indicators (1) EHSIS allows the construction of various disability indicators: Overall disability indicator Code 4 or 5 on any of the barriers questions in each life domain  disabled person –code 4: a health condition, illness, or disease –code 5: longstanding difficulties with basic activities (such as seeing, hearing, concentrating, moving around) Specific disability indicators (barriers to a specific domain) Indicators on the (overall or specific) barriers associated with specific health conditions or basic activity difficulties and personal/environmental factors

ESHSI – Indicators (2) Severity of disability in terms of the degree of lack of social integration: 1.by adding up the number of codes 4 and 5 in the 10 sections 2.by examining the need for specialised equipment or personal help  3 levels of severity: lacks no specialised equipment or personal assistance lacks specialised equipment only OR lacks personal assistance only lacks both specialised equipment AND personal assistance Severity of domain-specific disability when appropriate

Summary MEMH in EU-SILC: global question on activity limitations EHIS: limitation in basic activities (walking, seeing etc.) and more complex activities (ADL and IADL) LFS AHM: work related disability (specifically looking at limitations in amount, type, travel to and from work) EHSIS – barriers to life opportunities faced by people with health problems and impairments

Perspectives The environment is changing Rising importance of social statistics for policy making Rising expectations for flexibility and quality Growth of enabling technologies for producing, storing and sharing data Reduced budgets for public spending, including on statistics Need to adapt current systems => strategy for the modernisation of social statistics (incl. streamlining European social surveys)