Impact of Community-Based Rehabilitation (CBR) programs in Mandya district (Karnataka, India)

Transcription

1 Disability and the Majority World Towards a Global Disability Studies The 1st International Conference Impact of Community-Based Rehabilitation (CBR) programs in Mandya district (Karnataka, India) Jean-Francois Trani, Vincenzo Mauro Mario Biggeri, Jayanth Kumar, Parthipan Ramasami, Jayanth Kumar, Parul Bakhshi, Sunil Deepak and Ramesh Gariyappa

2 Background: disabilities and CBR Disability: different models and different strategies Initial view of CBR linked with Primary Health Care cheaper, simpler, community level interventions Relevance for WHO strategy in countries such as India Side-effects empowerment, organizations of persons with disabilities, advocacy, laws, leisure, sports CBR Matrix (WHO et al. 2010) Capability Approach (Sen, 1999)

3 Advantages of CBR Programmes CBR programmes are considered fundamental to improve the wellbeing of people with disabilities, and for fostering their participation in the community and society at large (Cornielje, 2009; Sharma, 2007). CBR programmes are also considered to be the most cost-effective approach to improve the wellbeing of people with disabilities, in comparison with care in hospitals or rehabilitation centres (Mitchell, 1999).

4 Evidence? little literature providing knowledge-based evaluation of the impact of CBR programmes on the well-being of people with disabilities tendency to concentrate limited resources on the implementation of CBR rather than on research and evaluation about it No universally agreed criteria for the evaluation of CBR programmes (Finkenfugel, Cornielje and Velema, 2007; Alavi and Kuper, 2010). NB: Very little research available on the effective participation of people with disabilities, families and communities in CBR.

5 Limited literature Alavi and Kuper (2010) identify a total of 51 studies evaluating the impact of rehabilitation for people with disabilities in Africa, Asia and Latin America (only two of these studies evaluating CBR programmes or services used a comparison group) Worldwide survey of researches and methods: literature is limited especially from an overall impact point of view.

6 (WHO et al. 2010)

7 Table 9.1. Re-framing the disability models through the capability approach for policy implementation - the data information matrix CAPABILITIES INFORMATIONAL SPACE Individual conversion factors Household/family level conversion factors Community Level State/Regional level Examples of dimensions/capabilies and functionings 1) Life and physical health Achieved functionings Are you now enjoying.?/sc ore^ Capabilities relevance for the group Agency Choices Is. Important to have for you?/score* Are you able to change your.?/ score~ Are you willing to have?/ 0/1 Means (commodities, resources, technology) Personal Impediment Means (commodities, resources, technology) Family Impediment Means (commodities, resources, technology) Community Impediment Means (commodities, resources, technology) State/ Regiona Impediment Do you have enough money to buy drugs?/0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 2) Love and care score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 3) Mental well-being score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 4) Bodily integrity and safety score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 5) Social relations score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 6) Participation / information score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 7) Education score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 7a Learning to know score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 7b Learning to be score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 7c Learning to live together score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 7d Learning to do score^ score* score~ 0/1 Do you have books to learn at school? 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 8) Freedom from economic and non-economic exploitation score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 9) Shelter and environment score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 10) Leisure activities score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 11) Respect score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 12) Religion and identity score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 13) Time autonomy and undertake projects score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 14) Mobility score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** Others dimensions score^ score* score~ 0/1 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** 0/1 ** Note that for relevant dimensions it is fundamental to dettail them in sub-dimensions. * score is given on a scale of measurement of importance of each capability dimension for the respondent ^ score is given on a scale of measurement of achieveme functionings for each capability dimension for the respondent ~ score is given on a scale of measurement of the level of sgency to change the achievement functionings for each capability dimension for the respondent Note: Internal factors, such as person characteristics (e.g. physical conditions, sex, skills, talents, intelligence, sensitivity, interaction attitude), convert resources (or commodities) into individual functionings. The conversion is also related to external factors such as social characteristics (e.g. publ policies, institutions, legal rules, traditions, social norms, discriminating practices, gender roles, societal hierarchies, power relations, public goods) and environmental endowments (e.g. infrastructure, country, public infrastructure, climate, pollution).

8 CBR programmes in Mandya and Ramanagar districts - Karnataka State, India AIFO The CBR project managed by SRMAB (Sri Raman Maharishi Academy for Blind) called Malavalli Project was initiated in 1997 in 25 villages, now about 1300 villages spread over 5 taluks (sub-districts) with around 11,000 persons with disabilities belonging to all the different groups of disabilities. The CBR project managed by MOB (Maria Olivia Bonaldo) called Mandya Project was initiated in 1998 in 4 villages, now 1200 villages spread over 4 sub-districts and reaches about 9,000 persons with disabilities.

9 Sampling design Two-stage Cluster Sampling: First stage units: Villages Second stage units: PwD within the selected village

10 Sampling scheme This design allows to collect more information: data are readily available Drawback of Cluster Sampling: generally it is less efficient if the clusters are not similar + cluster effect. Solution: using available information to stratify the villages and improve efficiency The more information available, the better the sampling scheme.

11 3 variables chosen for stratification of first stage units: Size of the Village (more/less than 1,000 units) Geographical position Year the CBR started Sampling scheme

12 Sampling scheme Total: 9x2x10= non-empty strata Sample size CBR areas = treated villages

13 Statistical Framework A useful statistical framework for Causal Inference is the one based on Potential Outcomes. Based on the work on randomized experiments by Fisher (1918 and later) and Neyman (1923), extended by Rubin (1974 and later) and subsequently by others to apply to non-randomized studies and other forms of inference. This perspective is called Rubin s Causal Model (RCM, Holland, 1986)

14 Statistical Framework We assume that people joining and not joining the program can be systematically different, but that we can control for this effect using a set of variables available for both groups. This assumption (namely unconfoundedness ) requires that all variables (covariates) that could influence both outcome and the probability of participating in the CBR are observed. Rosenbaum and Rubin (1983) developed the propensity score methodology. The propensity score is defined as the probability of a unit (e.g., a PwD) being assigned to a treatment (e.g. be part of the CBR program) the conditional probability, for a PwD, of joining the program

15 Outcomes The outcome variables analyzed are related to four (out of five) CBR matrix components and to the related capabilities: Health - Do you have or have you received any mobility aid or an appliance? Livelihood - Do you have a job/work for which you earn money? - Do you receive any pension or allowance? Social - Does your family consider your views in taking decisions? Empowerment and dignity - Can you express your views and participate in the family decisions?

16 Some results.. Health: Do you have or have you received any mobility aid or an appliance? In the propensity score analysis we selected only the large subgroup of people who declared in 2002 not to have any mobility aid or an appliance After 2 years N. treated N. controlled Effect St. dev t After 4 years N. treated N. controlled Effect St. dev t CBR programme has a significant effect (after four years as well as after two years) on reducing the negative impact of impairment and functionings

17 Some results.. Livelihood: Do you have a job/work for which you earn money? N. treated N. controlled Effect St. dev t CBR programme doesn t have a significant effect on employment after two years of implementation N. treated N. controlled Effect St. dev t Yet, after 4 years CBR has a high impact on the opportunity of people with disabilities to find a job/work (for those who had not it four years before)

18 Some results.. Livelihood: Do you receive any pension or allowance? N. treated N. controlled Effect St. dev t Propensity score analysis propensity shows an impact of the CBR programmes very close to zero after two years N. treated N. controlled Effect St. dev t After 4 years, the propensity score matching that confirms a 32% difference (p<0.001)

19 Some results.. Social participation: Does your family consider your views in taking decisions? N. treated N. controlled Effect St. dev t After 2 years, We observed better results for people with disabilities participating in the CBR programme: in almost 5% of cases, they improve their capacity to express opinions and take decisions, while this is observed in only 1% of the control group. N. treated N. controlled Effect St. dev t After 4 years, capacity to express opinions and take decisions improve by 7% (did not change significantly for control)

20 Some results.. Empowerment and dignity: Can you express your views and participate in the community decisions? N. treated N. controlled Effect St. dev t After 2 years, participating in the CBR programme has a positive effect on the possibility to express one s view. N. treated N. controlled Effect St. dev t After 4 years, participating in the CBR programme has a even higher positive effect on the possibility to express one s view.

21 Conclusions There are still no universally agreed criteria for the evaluation of CBR programmes (Finkenfugel et al., 2007) Evaluation through a technique based: methodologically on propensity score matching and theoretically both on the capability approach and CBR matrix (health, education, work, empowerment and social participation).

22 Conclusions Our results show that CBR programs have an overall positive and significant impact on the health, livelihood, social participation and empowerment of participants with disabilities, especially after four years of CBR activities. In a capability approach perspective, this signifies an increase in opportunities for people with disabilities to conduct the life they value which includes dignity, respect and social participation.

23 Further research More components analyzed (education, etc.) Impact evaluation of indirect effects Sensitivity analysis Continuous (non-binary) treatment

24 Thanks for your attention!

25 References Alavi Y. and Kuper H. (Eds.) (2010), Evaluating the Impact of Rehabilitation in the Lives of People with Disabilities and their Families in Low and Middle Income Countries A Review of Tools, London School of Hygiene & Tropical Medicine - UK, CBM Germany Biggeri M., Deepak S., Mauro V., Trani J-F, Kumar J., Ramasami P., Bakhshi P. and Gariyappa R. (2011), Impact of Community-Based Rehabilitation (CBR) Programmes in Mandya District (Karnataka, India), Report, AIFO, Bologna Cornielje H. (2009). The Role and Position of Disabled People s Organisations in Community Based Rehabilitation: Balancing Between Dividing Lines, Asia Pacific Disability Rehabilitation Journal, 20(1), Finkenflügel, H., Cornielje, H. and Velema, J., (2008), The Use of Classification Models in the Evaluation of CBR Programmes, Disability and Rehabilitation, 30(5), Fisher, R. A. (1918) The causes of human variability. Eugenics Review, 10, Holland, P. (1986) Statistics and causal inference. Journal of American Statistical Association, 81, Mitchell R. (1999). The research base of community-based rehabilitation, Disability & Rehabilitation, 21 (10 & 11), Neyman, J. (1923) On the application of probability theory to agricultural experiments: essay on principles, section 9. Translated in Statistical Science, 5, , 1990.

26 References Rosenbaum, P. R., and Rubin, D. B. (1983) The central role of the propensity score in observational studies for causal effects. Biometrika, 70, Rubin, D. B. (1974) Estimating causal effects of treatments in randomized and nonrandomized studies. Journal of Educational Psychology, 66, Rubin, D. B. (1976) Inference and missing data. Biometrika, 63, Rubin, D. B. (1977) Assignment to a treatment group on the basis of a covariate. Journal of Educational Statistics, 2, Rubin, D. B. (1978) Bayesian inference for causal effects: the role of randomization. Annals of Statistics, 6, Rubin, D. B. (1990) Comment: Neyman (1923) and causal inference in experiments and observational studies. Statistical Science, 5, Sen A K. (1999) Development as Freedom (Oxford: Oxford University Press). Sharma, S., (2007), Community participation in community-based rehabilitation programmes, Asia Pacific Disability Rehabilitation Journal, 18(2), WHO, ILO, UNESCO and IDDC (2010), Community-based Rehabilitation: CBR Guidelines, Towards Community-based Inclusive Development, Geneva.