1. Economic costs of living with disability and stigma in Vietnam Le Bach Duong On behalf of the research team Canberra, August 2014

2. PROJECT OVERVIEW

3. Project Rationale ISDS Disability Survey (2006): high incidence of S&D against PWDs from society and institutions Unavailability of quality data on disability, especially disability-related stigma Few studies on S&D are qualitative Low awareness of disability-related stigma and discrimination among the public, state institutions, and mass media Insufficient disability policies and programs regarding stigma and discrimination reduction Government’s needs of information/evidence for policies and programs

4. Project Purpose 1.Provide a profile of disability situation in Vietnam 2.Provide evidences of disability-related stigmas and their impact 3.Provide estimates of disability-related costs at household level 4.Estimate economic costs of disability-related stigmas at household level 5.Policy advocacy and public awareness raising

5. Project survey Project time line: From March 2010 through August 2013 Survey sites: 6 provinces (Lang Son, Thai Binh, Quang Nam, Kontum, Dong Nai, Vinh Long) and two largest cities (Hanoi and Ho Chi Minh City) Sample size: 4,224 of both PWDs and PWOD (out of over 20,000 household members screened for disability status) using the the Washington Group short set of six questions on disability, developed based on ICF framework.

6. RESEARCH APPROACH

7. Vicious cycle DisabilityPoverty Evidence from developing world as well as from Vietnam remains very little

8. Vicious cycle DisabilityStigmaPoverty

9. Cost of living with disability Stigma Disability

10. Costs of living with disability Cost of disability-related stigma

11. Definitions Disability ICF definition: Vision, hearing, moving, remembering, self-care, communication Disabled if “some difficulty” to at least one of the questions Stigma Validated stigma scale High stigma if stigma score>=median, upper of interquartile

12. Disability and stigma

13. Methods Development of stigma scale: – Review of other health related stigma scales – Conduct a qualitative study to explore types of stigma and its impacts on general activities, education, employment and health care among people with disability in Vietnamese context. – Discussion with experts to revise the first version – Field study to assess validity and reliability of the scale: 200 persons with disability and 200 persons without disability –  A scale of 40 questions after validation study

14. Stigma scale Stigma 40 questions Work related stigma (7 ) Family investment and self confidence (7) Health care related stigma (4) Paricipation and integration (5 ) Opportuniti es (6) Discriminat ion and self stigma (6) Perceived stigma (10) 40 questions: five options for choice: -Never (0); -Sometime (1); -Often (2) ; -Very often (3) -and Don’t know (DK)  Overall stigma score: 120 7 sub stigma scale score High stigma: Overall stigma score is 49 or greater (stigma score at upper interquartile value or greater)

15. Stigma score of people with and without disability

16. Subscale stigma score of people with and without disability

18. Linear regression of stigma score across socioeconomic groups show stigma score was significantly higher among: – PWD vs. PWOD – Female vs. male – Age: younger people vs. older people – People lived in urban areas vs. rural areas – People who are poorer vs. the better off – People who had lower educational levels vs. those with higher education

19. Percent of high stigma level attributed to disability: overall AR%=43.8%

20. Key messages PWD significantly had higher stigma score and 1.8 time higher risk of high stigma than people without disability did, The odds ratio of experiencing high stigma among PWD ranged from 1.5 to 11.7 depending on type of stigma and levels of difficulty The stigma score increased by increasing level of difficulty in all types of disabilities. The younger people suffered more from high stigma and had higher stigma score as compared to the older people.

21. Key message Those with higher education levels consistently had lower stigma score and lower risk of suffering from high stigma. The richest group significantly has lower stigma score than the poorest group did. PWD from the urban areas were more likely to have higher stigma score than those PWD from rural areas.

22. Key message Percentage of high stigma level attributed to disability ranged from 33% to 91% and depends on types and levels of difficulty: – People with communication, remembering and self -care difficulties had higher prevalence of high stigma than the people with other disabilities

23. Cost of living with disability

24. Indirect methods Costs of living with disability Join-effect of disability and stigma on the cost of living The standard of living approach 1. Extension of the standard of living approach 2. Oaxaca decomposition technique

25. The standard of living approach With the same income, PWD experience a lower standard of living than PWOD, because of diversion of money resources to goods and services required because of their disability. For a given standard of living it is possible to compare what incomes PWD and PWOD have=the extra costs incurred by disability

26. Extra cost = Y 1 -Y 0 = -b/a S = aY + bD + gX + k The standard of living

27. Annual cost of living with disability, by type (VND 000)

28. Annual cost of living with disability, by age (VND 000)

29. Annual cost of living with disability, by gender (VND 000)

30. Annual cost of living with disability, by location (VND 000)

31. Cost of living with disability, by severity (VND 000)

32. Cost of living with disability + stigma

33. 1. Extension of the standard of living approach Create a new variable 1.Non-disabled & Low-stigma 2.Non-disabled & High-Stigma 3.Disabled & Low-stigma 4.Disabled & High-Stigma

34. Annual cost of living with both disability and stigma Using median value of stigma score as cut-off point

35. Annual cost of living with both disability and stigma using upper bound of interquatile as cut-off point

36. Annual household income by disability and stigma status (median of stigma score as the cut-off point) (VND 000) 19.5% explained by stigma status

37. Annual household income by disability and stigma status (upper bound of inter-quartile of stigma score as the cut-off point) (VND 000) 31.6% explained by stigma status

38. Key messages 1.The cost of living with disability in Vietnam is substantial – Per household with PWD: 8.8%-9.5% of annual household income = VND 3.9-4.3 million or US$ 200-218 per year – For whole Vietnam: @ 6 million with disabled person= 1.2-1.3 billion USD per year 2.Communication difficulty was shown to result in highest additional costs. 3.The costs of living with disability in Vietnam were higher among households with disabled person aged 60 years old and over, among households with female disabled person and disable household located in urban area 4.The costs of living with disability increased as people had more severe impairment

39. Key message 5. Stigma aggravated the cost of living with disability – The cost of living with both disability and stigma was about 4 to 5-times higher than that of living with disability with any level of stigma; and – Stigma status explains 19.5%-31.6% of the income gaps between PWD and PWOD households

40. PROJECT PRODUCTS Report dissemination organized jointly by ISDS, HMU, PHAD and the Communist Party’s Central Committee for Culture and Communication. A peer-review publication (Global Public Health journal); another on stigma to come A guide for reduction of disability-related stigma for Party organs and the mass media

41. Thousands of a disability bulletin disseminated to all provinces Training courses on disability organized at the University of Labour and Social Affairs (under the Ministry of Labour, Invalids and Social Affairs) A tools for addressing disability-related stigma

42. Thank you a million