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Extended disability measurement set(s)

Draft position paper discussing the development of extended sets related to general disability measurement, with proposals, discussions, and recommendations by expert authors.

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Extended disability measurement set(s)

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

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