How does disability count in the World Report on Disability – Achievements and next steps …

1. Improving the Measurement of Disability and Ensuring Enabling Environment: Lessons from International Experience 10 February 2012, Istanbul, Turkey How does disability count in the World Report on Disability – Achievements and next steps … Nenad Kostanjsek, Bedirhan Üstün, Somnath ChatterjiDepartment of Health Statistics and Informatics WHO Geneva

2. Key questions? • How many disabled people in the world? • What is “disability” ? • How can we measure disability ? • completely ? • comparably ?

3. Counting disability in the WDRCompilation and analysis of three data sources • Empirical data from World Health Survey (WHS) • Empirical data from Country reported data (survey & census) • Imputed data from Global Burden of Disease (GBD) estimates

4. What is the ICF? • Classification & metrics for organizing & reporting health and disability data • Conceptual model for understanding health and disability

5. Use of a ICF definitions & concepts to measure disabilityDisability is beyond traditional impairments it is multidimensional BODYFunction/Structure (impairment) PERSONActivities(limitation) SOCIETYParticipation(restriction)

6. Order & wording of Disability survey and census questions Examples "God forbid someone should have a disability, but if they do are they: blind, deaf/dumb, crippled, mentally retarded/insane, multiple, other? How did they become disabled?" Pakistan "Are you blind? Bahamas, Mauritius and Zimbabwe…. If Yes, do you have any difficulty with the following activities…?" Do you need someone to help with, or be with them for, self care activities? For example: doing everyday activities such as eating, showering, dressing or toileting". Australia "Do you have any difficulty with the following activities…? If Yes, are you blind?" Uganda

7. How questions shape numbersUganda 1991 & 2001 censuses 2001: Do you have any difficulty in moving, seeing, hearing, speaking or learning, that has lasted or is expected to last 6 months or more? 2001 1991 1991: Is anyone in the household disabled?

8. Health and Disability Continuum Single domain Multiple domains Seeing Functions 10/20 Mild-Moderate vision impairment: Needs eye glasses, contact lenses… Overall 2/20 Cognition Interpersonal relationships Severe vision impairment: Needs operation Self Care Pain 1/20 Sleep & energy Complete vision impairment (blind): Needs assistance – pension, device, assistant environmental modifications Mobility Affect Vision

9. ICF: a common language Legislation DPOs Social services Health services

10. Shared Definitions ICF Definition of Disability "In the context of health. Disability is an umbrella term for impairments, activity limitations and participation restrictions. It denotes the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors)." ICF domain definition: d510 Washing oneself “Washing and drying one’s whole body, or body parts, using water and appropriate cleaning and drying materials or methods, such as bathing, showering, washing hands and feet, face and hair, and drying with a towel.”

11. b21020 Light sensitivity b21020 Light sensitivity b1 b21021 Colour vision b21022 Contrast sensitivity b2 b21023 Visual picture quality b21028 Quality of vision, other specified b3 b21029 Quality of vision, unspecified b4 b5 b6 b7 b8 The structure & codes of the classification ICF Contextual factors Functioning and Disability Body functions and Structures Activities and Participation Environmental factors Personal factors Body functions Body structures b210 b210 Seeing functions b2100 b215 b2101 Sensory functions and pain b220 b2102 Quality of vision b2102 b229 b2108 b230 b2109 b235 b240 Seeing functions of sensing a minimum amount of light (light minimum), and the minimum difference in intensity (light difference) Inclusion: functions of dark adaptation; impairments such as night blindness (hyposensitivity to light) and photophobia (hypersensitivity to light) b249 b250 b255 b260 b265 b270 b280

12. The structure & codes of the classification d1 d2 d3 d4 d5 d6 d7 d8 d9 ICF Contextual factors Functioning and Disability Body functions and Structures Activities and Participation Environmental factors Personal factors Body functions Body structures d910 d920 d 930 Religion and spirituality d940 d9200 Play d9300 Organized religion Engaging in organized religious ceremonies, activities and events. d950 d998 d999 d9 Community, social and civic life

13. Counting disability in the WDRAchievements & Findings (II) • 1,000,000,000 people with disabilities • 15% of the world population • 110-190 million (2%) have severe or extreme difficulties in functioning • First global disability prevalence rate after 40 years

14. Counting disability in the WDRAchievements & Findings (III) Triangulation of three data sources: • country reported data • GBD estimates • World Health Surveys • country reported data from LMIC is under-estimating disability • Variation of prevalence data

15. Disability data is multidimensional… • Information about functioning of basic body parts or organs IMPAIRMENT + • Information about capacity of person to do basic or complex actions ACTIVITY + • Information about extent of person’s participation in society PARTICIPATION + • Information about the impact of person’s ENVIRONMENT …but: Only 70 out of 193 countries surveyed in 2011 collect A/P information in census and disability surveys WRD 2011

16. Counting disability in the WDRAchievements & Findings (IV) Disability is… • affecting the most vulnerable • causing worse socio-economic outcomes for those affected • growing due to ageing and the epidemiological transition

17. Disability in Ageing PopulationsStudy on Global Ageing and Adult Health (SAGE) SAGE countries: China, Ghana, India, Mexico, Russian Federation and South Africa WHODAS 2.0 disability summary score computed from 6 domains of life: Disability is affecting the poor and female population

18. Not an impairment based: "counting the disabled" Certain groups are missed Statistics often not fit for purpose (e.g. service needs, participation gaps) Poor comparability Numbers could not be used further exploration and multiple purposes Based on ICF model: Multidimensional & Universal Include different life domains Capture multiple groups of disability- irrespective of cause Numbers are more comparable Statistics can be used for multiple purposes Can be linked with health & disability surveys Data Utility

19. Monitoring matrix example

20. Counting disability in the WDRWhat is needs to be explored further? • Convergence of Health and Disability • Concepts • Statistics • Interventions • Develop methods for: • Individual cases • Populations • Develop measures for: • environmental factors • Establish population norms for functioning • Work towards “epidemiology of functioning”

21. Develop an INTEGRATED SET of Disability Questions Indicate the population values for various purposes Needs assessment (services, assistance, education, …etc) Monitoring (progress in CRPD implementation, outcome of interventions, …) Serve for comparisons across and within countries Integrated so that the identified populations could be examined further Links with censuses: short, simple, relevant Links with disability surveys: entry level Links with health surveys: concordant, feasible WB/ WHO Project: Design of Model Disability SurveyObjectives

22. WB/ WHO Project: Design of Model Disability SurveyScope of activities • Phase 1: Data collection, analysis and preliminary drafting • Understanding the science (Lit review, KIS) • Database construction • Micro-data collection and statistical analysis • Expert consensus preliminary drafting • Phase 2: Cognitive testing and finalization • Cognitive testing • Pilot study and finalization • Phase 3: Implementation of National Disability Surveys

23. Counting disability in the WDRTake home message • Disability is a major public health issue • 15% of global population • Comparable measurement of disability • using data standards -> ICF • To improve the quality & utility of national reported prevalence data countries need to measure • functioning levels in multiple domains • using a continuum approach

24. Why do we need functioning information? Look beyond diagnosis to measure the health gain “The art of shoe polish” Meric Semizoglu “Shadow of disability” Mehmet Tamer Kunduracioglu “Wheels of generations" Ozer Kanburoglu