1. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 1 Extended disability measurement set(s) Draft position paper for discussion, presented by Marijke de Kleijn

2. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 2 Chapter 1: Introduction Task: proposal for approach development of extended set/s related to the general disability measure/s Workgroup: Carlotta Besozzi, Ken Black, Emmanuelle Cambois, Gunilla Davidsson,Marijke de Kleijn, Don Lollar, Ros Madden, Xing-Yan Wen CC: Nenad Kostanjsek and Somnath Shatterji Chapters: prepared by members, no time to discuss the complete paper Aim session: discuss each chapter, decide how to proceed, by who and when

3. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 3 Chapter 2: Purpose of extended set/s Author: Xing-Yan Wen, AIHW Proposal: same as the general disability measure Discussion items: –Why do we need –Specific purposes –Flexibility (core and variations) –Detailed domains of ICF or not –Further work on specific purposes: listing, prioritizing, relationship of specific purposes and issues of other chapters

4. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 4 Chapter 3: relationship general and extended Author: Gunilla Davidsson Proposal/discussion: –One or more sets? –One at the same time –Which kind of sets –Start one set covering all areas –Later more detailed or additional sets –Set especially for war countries ? Two parallel groups

5. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 5 Chapter 4: required characteristics Author: Ken Black, ABS Proposal/discussion: –Various components/domains of ICF –Trained lay interviewers –Underlying medical conditions –Combinations of questions –Identify mutually exclusive groups –Limitations by time/respondent burden, budget –Question on treatment/medication –Additional questions mental illness –Questions very young children and older people –Performance approach –Inlcusion institutionalized people –Disability module: larger + shortened set

6. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 6 Chapter 5: existing/recommended material Author: Marijke de Kleijn Proposal: –UN guidelines? –Matrix with ICF dimensions/domains versus existing/recommended sets (wg3) –in order to identify common elements –Euroreves experiences to be taken into account in choosing relevant items (Emmanuelle) –Result: list of recommended items (+ questions)

7. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 7 Chapter 6A: people with disability Author: Carlotta Besozzi Proposal/discussion: –Dialogue in own country –Contacts with national umbrella organizations –National disability organizations to be involved in implementation (translation, accessibility of questionnaire, testing) –Interviewers training including disability awareness, people with disability as interviewers

8. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 8 Chapter 6B: key policy decision makers Author: Don Lollar Proposal/discussion: –Influence national policy makers –White paper –Mechanism WG members act as consultants for each other –Exchange of implementation experience with one another

9. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 9 Chapter 7: methodological issues Full population coverage Cultural appropriateness/sensitivity issues Specific issues see UN guidelines Other such as proxi, scoring systems, recommended groupings and tables

10. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 10 Chapter 8: testing Initial testing (cognitive) Larger scale pilotting Feed back of testing results Possibly redesign Possibly further testing

11. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 11 Chapter 9: implementation Validation Translation Training Educational material, user guide How to reach relevant parties Quality assurance Comparability of data (pre harmonization, post harmonization and in between harmonization)

12. National Institute for Public Health and the Environment Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004 12 Chapter 10: next steps Up to you! Discussion Decisions –How –What –Who –When