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Measuring disability and monitoring the UN Convention on the Rights of Persons with Disabilities: the work of the Washington Group on Disability Statistics.

Madans JH, Loeb ME, Altman BM - BMC Public Health (2011)

Bottom Line: A series of extended sets of questions is currently under development and some of the sets have been tested in several countries.The assistance of many National and International organizations has allowed for cognitive and field testing of the disability questionnaires in multiple languages and locations.This paper will describe the work of the Washington Group and explicate the applicability of its approach and the questions developed for monitoring the UN Convention on the Rights of Persons with Disabilities.

View Article: PubMed Central - HTML - PubMed

Affiliation: National Center for Health Statistics, Hyattsville, MD 20782, USA. jhm4@cdc.gov

ABSTRACT
The Washington Group on Disability Statistics is a voluntary working group made up of representatives of over 100 National Statistical Offices and international, non-governmental and disability organizations that was organized under the aegis of the United Nations Statistical Division. The purpose of the Washington Group is to deal with the challenge of disability definition and measurement in a way that is culturally neutral and reasonably standardized among the UN member states. The work, which began in 2001, took on added importance with the passage and ratification of the UN Convention on the Rights of Persons with Disabilities since the Convention includes a provision for monitoring whether those with and without disabilities have equal opportunities to participate in society and this will require the identification of persons with disabilities in each nation. The International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization provided a framework for conceptualizing disability. Operationalizing an ICF-based approach to disability has required the development of new measurement tools for use in both censuses and surveys. To date, a short set of six disability-related questions suitable for use in national censuses has been developed and adopted by the Washington Group and incorporated by the United Nations in their Principles and Recommendations for Population and Housing Censuses. A series of extended sets of questions is currently under development and some of the sets have been tested in several countries. The assistance of many National and International organizations has allowed for cognitive and field testing of the disability questionnaires in multiple languages and locations. This paper will describe the work of the Washington Group and explicate the applicability of its approach and the questions developed for monitoring the UN Convention on the Rights of Persons with Disabilities.

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Matrix developed to guide the development of the extended sets of questions. 1. Measurement is WITHOUT the use of assistive devices or other help WITH THE EXCEPTION OF VISION (glasses/lenses) and HEARING (hearing aids). These are both measured WITH the use of assistive devices and thus do NOT represent true measures of Capacity. As such, extended set multiple questions are captured under Performance (row 4). NB - SEVERITY is captured in response categories. 2. Micro-environment: technical and personal assistance that follows the persons wherever they go (e.g. wheelchair, eye glasses, personal attendant). ICF Environment Chapter 1 & 3. 3. Meso-environment: the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others). ICF Environment Chapters 2 & 4. Meso-environmental questions may also be non-domain specific. 4. Macro-environment: that which affects a whole country, such as policies and legislation, general societal attitudes and practices. ICF Environment Chapter 5. Macro-environmental questions are NOT domain specific. 5. Pain and Fatigue are not obvious functional domains (nor are they in the ICF); however, they are included here as domains. a) one question for children/one question for adults b) available for special populations c) no mention of functioning without AD - includes Intensity (How often?) d) upper body short set question is the ADL short set question
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Figure 2: Matrix developed to guide the development of the extended sets of questions. 1. Measurement is WITHOUT the use of assistive devices or other help WITH THE EXCEPTION OF VISION (glasses/lenses) and HEARING (hearing aids). These are both measured WITH the use of assistive devices and thus do NOT represent true measures of Capacity. As such, extended set multiple questions are captured under Performance (row 4). NB - SEVERITY is captured in response categories. 2. Micro-environment: technical and personal assistance that follows the persons wherever they go (e.g. wheelchair, eye glasses, personal attendant). ICF Environment Chapter 1 & 3. 3. Meso-environment: the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others). ICF Environment Chapters 2 & 4. Meso-environmental questions may also be non-domain specific. 4. Macro-environment: that which affects a whole country, such as policies and legislation, general societal attitudes and practices. ICF Environment Chapter 5. Macro-environmental questions are NOT domain specific. 5. Pain and Fatigue are not obvious functional domains (nor are they in the ICF); however, they are included here as domains. a) one question for children/one question for adults b) available for special populations c) no mention of functioning without AD - includes Intensity (How often?) d) upper body short set question is the ADL short set question

Mentions: The matrix in Figure 2 depicts the extended set modules being developed – hash marks represent the existing short set of six questions, added columns represent additional domains, and rows depict the different aspects of functioning within those domains. Cells shaded in grey represent the set of extended questions tested in the UNESCAP region.


Measuring disability and monitoring the UN Convention on the Rights of Persons with Disabilities: the work of the Washington Group on Disability Statistics.

Madans JH, Loeb ME, Altman BM - BMC Public Health (2011)

Matrix developed to guide the development of the extended sets of questions. 1. Measurement is WITHOUT the use of assistive devices or other help WITH THE EXCEPTION OF VISION (glasses/lenses) and HEARING (hearing aids). These are both measured WITH the use of assistive devices and thus do NOT represent true measures of Capacity. As such, extended set multiple questions are captured under Performance (row 4). NB - SEVERITY is captured in response categories. 2. Micro-environment: technical and personal assistance that follows the persons wherever they go (e.g. wheelchair, eye glasses, personal attendant). ICF Environment Chapter 1 & 3. 3. Meso-environment: the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others). ICF Environment Chapters 2 & 4. Meso-environmental questions may also be non-domain specific. 4. Macro-environment: that which affects a whole country, such as policies and legislation, general societal attitudes and practices. ICF Environment Chapter 5. Macro-environmental questions are NOT domain specific. 5. Pain and Fatigue are not obvious functional domains (nor are they in the ICF); however, they are included here as domains. a) one question for children/one question for adults b) available for special populations c) no mention of functioning without AD - includes Intensity (How often?) d) upper body short set question is the ADL short set question
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC3104217&req=5

Figure 2: Matrix developed to guide the development of the extended sets of questions. 1. Measurement is WITHOUT the use of assistive devices or other help WITH THE EXCEPTION OF VISION (glasses/lenses) and HEARING (hearing aids). These are both measured WITH the use of assistive devices and thus do NOT represent true measures of Capacity. As such, extended set multiple questions are captured under Performance (row 4). NB - SEVERITY is captured in response categories. 2. Micro-environment: technical and personal assistance that follows the persons wherever they go (e.g. wheelchair, eye glasses, personal attendant). ICF Environment Chapter 1 & 3. 3. Meso-environment: the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others). ICF Environment Chapters 2 & 4. Meso-environmental questions may also be non-domain specific. 4. Macro-environment: that which affects a whole country, such as policies and legislation, general societal attitudes and practices. ICF Environment Chapter 5. Macro-environmental questions are NOT domain specific. 5. Pain and Fatigue are not obvious functional domains (nor are they in the ICF); however, they are included here as domains. a) one question for children/one question for adults b) available for special populations c) no mention of functioning without AD - includes Intensity (How often?) d) upper body short set question is the ADL short set question
Mentions: The matrix in Figure 2 depicts the extended set modules being developed – hash marks represent the existing short set of six questions, added columns represent additional domains, and rows depict the different aspects of functioning within those domains. Cells shaded in grey represent the set of extended questions tested in the UNESCAP region.

Bottom Line: A series of extended sets of questions is currently under development and some of the sets have been tested in several countries.The assistance of many National and International organizations has allowed for cognitive and field testing of the disability questionnaires in multiple languages and locations.This paper will describe the work of the Washington Group and explicate the applicability of its approach and the questions developed for monitoring the UN Convention on the Rights of Persons with Disabilities.

View Article: PubMed Central - HTML - PubMed

Affiliation: National Center for Health Statistics, Hyattsville, MD 20782, USA. jhm4@cdc.gov

ABSTRACT
The Washington Group on Disability Statistics is a voluntary working group made up of representatives of over 100 National Statistical Offices and international, non-governmental and disability organizations that was organized under the aegis of the United Nations Statistical Division. The purpose of the Washington Group is to deal with the challenge of disability definition and measurement in a way that is culturally neutral and reasonably standardized among the UN member states. The work, which began in 2001, took on added importance with the passage and ratification of the UN Convention on the Rights of Persons with Disabilities since the Convention includes a provision for monitoring whether those with and without disabilities have equal opportunities to participate in society and this will require the identification of persons with disabilities in each nation. The International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization provided a framework for conceptualizing disability. Operationalizing an ICF-based approach to disability has required the development of new measurement tools for use in both censuses and surveys. To date, a short set of six disability-related questions suitable for use in national censuses has been developed and adopted by the Washington Group and incorporated by the United Nations in their Principles and Recommendations for Population and Housing Censuses. A series of extended sets of questions is currently under development and some of the sets have been tested in several countries. The assistance of many National and International organizations has allowed for cognitive and field testing of the disability questionnaires in multiple languages and locations. This paper will describe the work of the Washington Group and explicate the applicability of its approach and the questions developed for monitoring the UN Convention on the Rights of Persons with Disabilities.

Show MeSH
Related in: MedlinePlus