National Institute for Public Health and the Environment Washington Group on Disability Statistics,...

Washington Group on Disability Statistics, Bangkok, September 29 - October 1, 2004

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National Institutefor Public Health andthe Environment

Extended disability measurement set(s)

Draft position paper for discussion, presented by Marijke de Kleijn


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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


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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


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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


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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


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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)


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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


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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


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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


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Chapter 8: testing

• Initial testing (cognitive)• Larger scale pilotting• Feed back of testing results• Possibly redesign• Possibly further testing


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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)


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Chapter 10: next steps

• Up to you!• Discussion • Decisions

– How– What– Who– When

National Institute for Public Health and the Environment Washington Group on Disability Statistics,...

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