French recent surveys on disability A few lessons Task force on survey based disability statistics Luxembourg, 28-29 june 2010 Maude Espagnacq, Health and Sports French Ministry Pascale Roussel, CTNERHI

French disability survey (Handicap-Santé, 2008-2009) Aims and architecture To provide information on each dimension of disability (risk factors, impairments, activity limitations, participation restrictions, technical and human environments) and assess the number of concerned persons To identify obstacles and facilitators to full social participation To provide data for the whole population living in France 4 surveys: 2 surveys dealing with the general population : one screening survey (VQS), one main survey (HSM) One survey in social and medical institutions (HSI) One survey related to informal caregivers (HSA) Eurostat 2010, Task force on disability statistics, French contribution

VQS: Vie quotidienne et santé Daily Life and Health A screening survey of the whole population, to get enough severely disabled persons in the final sample leads to HSM Sample A screening based on different types of information : 26 questions Socio demographic : gender and age health conditions (MEHM), level of functional limitations (seeing, hearing,speaking, kneeling, using hands and fingers, remembering, solving daily problems…) , home adaptations, technical aids, self perception of disability, allowances or special school. VQS Sample :  141 000 households and 238 000 persons HSM Sample :  40 000 persons corresponding to four different presumed disability levels   30 000 respondents Eurostat 2010, Task force on disability statistics, French contribution

HSM: collecting the data A survey scheme intended to gather health and disability data (mainly on disability) Disability data based on ICF model :12 main sets of questions : 1 related to impairments 1 related to functional limitations 1 related to activities limitations : ADL, IADL 4 related to Social Participation: School, Employment, Leisure, Income and Allowances 5 related to Environnement : Technical Aids, Family, Home, City, Discrimination Disability and social participation: Capacity and Performance questions A few questions linked to choice of life: do you go outside as much as you wish? wherever you wish? when you wish ? Environment mainly described from a descriptive point of view, often introduced by « difficulties » questions Eurostat 2010, Task force on disability statistics, French contribution

Using the HID (first French disability survey, 1999) and HSM data HSM 2008 data are just starting to be available In our previous disability (HID) survey, participation restrictions were mainly analyzed through selected statistical correlations selected : e.g. is unemployment statistically linked with one or another type of impairment, with one or another type of activity limitations? were seldom directly asked to interviewees in terms of: what prevents you from …? Eurostat 2010, Task force on disability statistics, French contribution

What do we learn from those surveys? HID enabled a lot of progress in describing the participation restrictions and the other dimensions of disablement, describing the social situation of persons with activity limitations, describing the support (technical aids, family care etc.) and the needs of persons with activity limitations and some barriers that contribute to the disablement process The screening procedure: an efficient tool but time consuming Eurostat 2010, Task force on disability statistics, French contribution

HID limits HSM limits? HID cannot be seen as explaining every step of the disablement process: For example: to what extent are blue collar workers more disabled because of their work vs. to what extent are disabled persons more frequently working in industrial jobs? Still a lot of work to do, specially biographical data which have collected (since when…), but it is a hard work and sometimes disappointing one Will see whether the new formulations, or interrogations that have been made in HSM will enable to progress on that difficult task Eurostat 2010, Task force on disability statistics, French contribution

Usefulness and difficulties of a screening procedure only way to be sure to get enough people belonging to narrow categories (those with important activity limitations) provides significant information on a very large sample Constraints requires to avoid as much as possible the “false negatives”, therefore: it needs to include different types of questions : perceived situation, “objective” situation, administrative situation it needs to introduce specific questions for persons with psychological/ cognitive difficulties Eurostat 2010, Task force on disability statistics, French contribution

The new EDSIM questionnaire Thank you for including general information (“classificatory variables”), Thank you for including the MEHM questions which allow comparisons with other surveys, We wonder whether the diseases list is the most important health related information (is disease an adequate indicator of the functional level?) We wonder whether the basic activities list could be reexamined (should not the list of basic activities be reexamine according to the participation domains that are meant to be highlighted?, are there enough questions dealing with limitations due psychological problems? ) We wonder whether the dichotomic way of enquiring on activity limitations is an adequate one (other studies usually allow to answer with several modalities), Eurostat 2010, Task force on disability statistics, French contribution

Questions about EDSIM The previous EDSIM questionnaire has been tested : what are the results of the tests ? In terms of the understanding of the questions and quality of the answers ? In terms of length of the questionnaire? In terms of inter-cultural comparability Difference that will be observed may come from material differences, differences in understanding the questions, differences in the model of disability: how do we plan to deal with that? Eurostat 2010, Task force on disability statistics, French contribution

Can we clarify the objectives of EDSIM? Are we looking for information for Europe in general, or for comparisons between different countries? Are we interested in perceptions ? In objectives situations? In both? Are we interested in present situations? Or are we interested in understanding the process? Do people often mention the whole process in the showcard E ? ie. They may mention only one reason, even if there are a lot of factors that prevent them from doing something, They may not understand the complete scheme : they may say that financial reasons prevent them from using their vehicle, without saying (or even beeing aware) that this financial situation is partly due to their long term difficulties in hearing . In other words, isn’t there a risk of underestimating the health and environmental factors? The disability question in Europe is a very important question and it needs to further thought Eurostat 2010, Task force on disability statistics, French contribution

Thank you for your attention Eurostat 2010, Task force on disability statistics, French contribution