Research on people with disabilities in Zambia: Recent experience and findings

1. Research on people with disabilities in Zambia: Recent experience and findings presented by: Mitchell Loeb A “rogue” researcher from: SINTEF Health Research OSLO, Norway

2. Collaborating Partners Norway: • SINTEF Health Research • Norwegian Federation of Organisations of Disabled People (FFO) • Atlas Alliance: on behalf of the Norwegian Agency for Development Co-operation (NORAD)

3. Collaborating Partners Zambia: • Zambian Federation of the Disabled (ZAFOD) • University of Zambia, Institute on Economic and Social Research (INESOR) • Central Statistical Office (CSO)

4. Objectives: Overall • to contribute to the improvement in living conditions among people with activity limitations in Zambia

5. Objectives • to develop a strategy and methodology for the collection of comprehensive, reliable and culturally-adapted statistical data on living conditions among people with disabilities (with particular reference to the International Classification of Functioning, Disability and Health - ICF) • to initiate a discussion on the concepts and understanding of “disability” • to include and involve people with disabilities in every step of the research process

6. Design & Methodology: • Choice of instruments: • Living conditions (Namibia), • Disability survey (South Africa), • Activity limitations & Participation restrictions (ICF- World Health Organisation) • Disability screening (Washington Group) • Adaptation to Zambian context through multi-disciplinary workshops including key stakeholders (issues of both design and methodology)

7. The Disablement Phenomenon - 1980 Disease or Impairment(s) Disability(ies) Handicap(s) disorderBody level Personal level Societal level

8. Screening for Disabilities Screening based on impairments: the ”What’s wrong with you?” approach: Questions used to identify persons with disabilities:Zambia Census 1990 Is (name of interviewee): Blind? Yes/NoDeaf/dumb? Yes/NoCrippled? Yes/NoMentally retarded? Yes/No

9. Disability prevalence

10. Global disability prevalence rates* * Sources and methodologies are country specific

11. Screening for Disabilities Questions used to identify persons with disabilities: Zambia Census 2000 “…disability refers to a person who is limited in the kind or amount of activities that he or she can do because of on-going difficulties due to long term physical, mental or health problems.” • includes partially sighted and hearing impaired • prevalence 2.7%

12. The ICF Model - 2001

13. Screening for Activity Limitations: I The “What do you need to become a fully active and integrated member of your society?” approach The use of global screening questions based on difficulties in doing certain daily activities: activity limitations

14. Screening for Activity Limitations: II Because of a health problem (physical, mental or emotional problem): • Do you have difficulty seeing, even if wearing glasses? • Do you have difficulty hearing, even if using a hearing aid? • Do you have difficulty walking or climbing steps? • Do you have difficulty remembering or concentrating? • Do you have difficulty with self-care such as washing all over or dressing? • Do you have difficulty communicating; for example understanding or being understood by others?

15. Screening for Activity Limitations: III Questions used to identify persons with disabilities: Living Conditions Survey Zambia 2006 - WG6 Response categories: No, Some, A lot, Unable to do it At least two of six Domains have at least some difficulty • prevalence 13.4%

16. Prevalence: Activity limitations – a theoretical model

17. Number of households and individuals in the study * of 2898 persons screened with disabilities, 65 were found upon detailed interview to be non-disabled; false positives; 2.2% **represents false negatives; 6.2%

18. Functioning Matrix: Sample prevalence (%) by domain and degree of difficulty (N=28010; 179 missing) D1 = at least some difficulty D2 = at least a lot of difficulty D3 = unable to do it at all

19. Sample prevalence measures

20. Questionnaires used in the survey Part 1a: Household survey (individuals) • composition of household • education • economic activity • reproductive health Part 1b: Household survey (households) • income, expenses, ownership of land and assets • housing and physical environment • transport and communication Part 2: Detailed disability survey • activities and participation matrix

21. 9 Domains & 44 Activities • Sensory experiences: watching, listening • Basic learning & applying knowledge: reading, writing • Communication: producing and receiving messages • Mobility: walking, moving around • Self-care: washing, dressing • Domestic life: shopping, preparing meals • Interpersonal relations: making friends, interacting with strangers • Major life areas: going to school, getting a job • Community, social and civic life: clubs, religious, politics

22. Activity Limitation (a measure of capacity) How DIFFICULT it is for you to perform this activity WITHOUT ASSISTANCE? • 0 - no difficulty • 1 - slight difficulty • 2 - moderate difficulty • 3 - severe difficulty • 4 - unable to carry out the activity

23. Activity Limitations Activity limitation score

24. Participation Restriction (a measure of performance) Do you have any PROBLEMS performing this activity in your CURRENT ENVIRONMENT? • 0 - no problem • 1 - mild problem • 2 - moderate problem • 3 - severe problem • 4 - complete problem (unable to perform)

25. Opportunities • Disability is no longer be defined according to one’s physical impairment (the “What’s wrong with you?” approach) • Equality, Accessibility, Inclusion and Human Rights become key elements to the definition of disability (the “What do you need to become a fully active participant in your society?” approach)

26. Opportunities • Disability is thought of as a process rather than as a state or condition. • Approach to dealing with disability shifts from fixing or repairing a deficit (physical impairment) to the removal of barriers (including attitudinal), thus creating better access and improving social participation. • Domain of disability also shifts away from the medical realm to the socio-environmental.

27. Opportunities • Inclusion of people with disabilities becomes paramount to the approach. • Thus, people with disabilities are no longer thought of as patients, beneficiaries, or research subjects - but become empowered peers, research participants and decision makers.

28. Challenges • In Organisations: • Getting the message across: dissemination, education, communication, awareness building • In Research • Change our way of thinking of disability: - from a dichotomy: disabled versus not disabled - to a continuum: degree of activity limitation or degree of participation restriction • In Society: • Normalising or demystifying disability

29. Reports on Living Conditions among People with Disabilities in Namibia, Zimbabwe, Malawi & Zambia are available for download in pdf-format on the : • SINTEF website:www.sintef.no • SAFOD website:www.safod.org (look for the link to surveys on living conditions) • alternatively, contact me: mitch.loeb@sintef.no