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MANDYA CBR RESEARCH INITIATIVE

Samagama - Participatory Action Research & Knowledge in Community-based Rehabilitation
Mandya District of Karnataka (India), 2010-2012

Summary

According to WHO, about 10% of the population has a disability. Disability and poverty are closely linked in a mutually reinforcing way. More than 80% of disabled persons in developing countries do not have any access to any rehabilitation services. The strategy of community-based rehabilitation (CBR) was proposed by WHO in early nineteen eighties.

Over the previous three decades, there have been a number of paradigm shifts in relation to disability and rehabilitation, including:

• A shift from medical model of disability to a more inclusive human rights approach towards disability

• A shift from vertical services meant only for specific groups of persons with disabilities towards inclusion in existing services for the population (mainstreaming)

• A shift from institution-based services towards a holistic approaches that take account of persons own participation, community-based approaches and referral services.

These paradigm shifts have seen gradually increasing role of CBR programmes in different countries specially for reaching the un-reached disabled persons in rural and poor communities. In many developing countries, CBR is part of the official national strategy for rehabilitation services. Increasingly there are calls for inclusion of persons with specific disabilities such as leprosy related disabilities and mental illness in CBR programmes.

However, scientific research on different aspects of CBR, how it is implemented, how different groups of persons with disabilities access it and benefit from it are extremely limited. Therefore, Disability & Rehabilitation team of WHO (WHO/DAR) has decided to promote an international group of researchers to promote scientific research on CBR.

S-PARK/CBR research initiative is part of the joint action plan of WHO/DAR and AIFO, and involves different universities from the developed and developing world. The research is rooted in participatory methodologies. The name of the initiative ("Samagama", literally it means coming together, joining hands for something useful), has been chosen by disabled persons involved in the CBR activities.

Broad Over-View of S-PARK/CBR Research Initiative

The research will cover Mandya district, an area of about 500 sq km, where two organisations (SRMAB and MOB) have been implementing CBR programmes covering all the five areas mentioned under CBR Matrix for the last ten years and reach out to 22,000 persons with disabilities belonging to all the different disability groups. Global coordination of this research is under Dr. Sunil Deepak, head of Scientific Support Department of AIFO/Italy, while coordination in India is under Dr Jayanth Kumar of AIFO/India office.

This research will take place in three phases:

• Preparatory Phase: 2008-09 was the preparatory phase of the research during which different stakeholders and their roles were identified and research protocol as well as different data collection tools were identified.

• Field research: The second phase of the research dealing with field research and data analysis will be covered during 2009 to 2011. This phase of research is composed of three distinct components as explained below.

• Sharing the results of the research: The last phase of the research in 2012 is for completing the data analysis, preparation of consolidated research reports in a book form and their diffusion.

The second phase, S-PARK/CBR field research is composed of three main research components, that are inter-linked, and in part, parallel. These 3 field research components are:

(1) Quantitative research based on structured interviews of a stratified sample of about 2500 persons from CBR area and another 300 persons from a neighbouring area not covered by CBR programme. This component of the research will also look at any uncovered persons with disabilities in the areas where CBR programme is implemented. Scientific Support Group for this component of research includes persons from St John Research institute (Bangalore), Tirupathy university, LCI South Asia, Florence university (Italy) and London University college (UK). Research questionnaires for this component have been finalized and data collection was started in December 2009. Apart from AIFO/Italy, this component of the research has received funding from SMHF/Japan and DAHW/Germany.

(2) Emancipatory research, looking at impact of CBR from the point of view of persons with disabilities: The CBR programme area has about 230 self-help groups of persons with disabilities and more than 100 community level DPOs that are organised in sub-district and district level DPO federations. The Scientific Support Group for this component of research will include persons from Delhi university (India), Leeds university (UK), DPI (Italy), National Leprosy Forum (India), Mobility India (Bangalore), etc. along with about 20 representatives of persons with disabilities and thier family members. Scientific Support Group for this research component is expected to meet in Bangalore (India) in April 2010.

(3) Specific qualitative studies: There are a number of specific areas that require greater understanding. For example the following: (a) Hidden disabilities, in the sense that certain groups of disabled persons are never identified by CBR programme: preliminary discussions show that certain groups of disabled persons including persons with epilepsy, transgender persons, may not be known to the CBR programme. (b) Disabling conditions with strong social stigma: Conditions such as leprosy and mental illness are often linked with social stigma that creates barriers to their inclusion in different activities of CBR.

More information and reports from this research study will be available for consultation from these webpages in the coming months. If you want any specific information about this research, kindly write to Dr. Sunil Deepak at AIFO/Italy: sunil.deepak(at)aifo.it (Substitute "(at)" with "@" in the email).