EXECUTIVE SUMMARY

Background and aim

Community-based rehabilitation (CBR) has been advocated internationally for more than 20 years as the core strategy for improvement of the quality of life of persons with disabilities. Despite emphasizing that disabled persons should be active partners in the planning and implementation of all measures affecting their civil, political, economic, social and cultural rights, persons with disabilities have not yet become sufficiently involved in evaluations and impact assessments. Based on these observations of gaps in previous evaluations, the Swedish Organizations of Disabled Persons International Aid Association (SHIA) and the World Health Organization (WHO) have concluded that it is timely to study the impact of the CBR strategy, after its 20 years of existence, from the perspective of persons with disabilities, including both children and adults.

The aim of the study is to examine the impact of CBR programmes on the quality of life of disabled persons and to identify the CBR initiatives perceived as being the most useful. The study is not attempting to evaluate the different programmes in relation to their particular objectives and strategies. Instead, it attempts to give voice to the experiences of persons with disabilities in some programmes with different aims, structures and strategies.

Method

Three countries, Ghana, Guyana and Nepal, were selected because they represent different approaches, regions and organizational models. In-depth interviews were held with 33 individual persons with disabilities - or their parents in 12 cases. In addition to the individual interviews, inquiry groups were created in all three communities in each country - nine groups in total. Through the group interviews an additional 80 persons with disabilities and their parents were reached and had their views recorded. Alt ogether 150 hours of interviews were taped and transcribed. The answers were organized into categories according to

• the quality of life domain to which they referred
• the particular type of CBR initiative to which they referred

Given the limited sample and the nature of qualitative enquiry, one must be careful about making broad generalizations on the findings of the study. However, as the answers given by the interviewees show a great congruence despite differences in background and organization of the CBR programmes, and despite differences in the political and cultural contexts, general conclusions may still be drawn.

Findings

The stories told by the interviewees in this study give evidence of many positive effects of the CBR programmes, but they also express concerns about the efficiency and sustainability of the programmes. CBR programmes seem to have initiated change processes in social norms and values, which are essential for the further development of quality of life of persons with disabilities.

This study indicates that CBR has impacted positively on the following aspects of quality of life:

However, impact is limited concerning:

The number of communities reached remains very small and the expectation that the community (or district government), once awareness was raised, would provide the necessary resources, basic services and simple assistive devices, etc., has not been fulfilled.

Looking at the different CBR programmes it can be concluded that the initiatives perceived as the most useful by persons with disabilities were (in order of priority):

It was noted that CBR programmes largely continue to regard persons with disabilities as benefic iaries and not as participants with a voice and a choice. Any influence by disabled persons and their organizations in the CBR programmes is limited. The number of persons with disabilities engaged at different levels in CBR programmes is still negligible even after 20 years of these programmes being realized.

Conclusions and recommendations

The study outlines a number of recommendations by persons with disabilities suggesting how CBR programmes could be improved in the areas of awareness-raising, medical care, rehabilitation, education and income generation. It especially indicates that, in all these areas, participation of disabled persons as role models, self-advocates and employed experts would increase quality and efficiency of the programmes.

CBR programmes must recognize that social change and fulfilment of human rights will not occur by targeting the community level alone. Neither will they occur by targeting only central policy- makers and legislators. Improved conditions for persons with disabilities depend on the combined efforts of a number of stakeholders. Persons with disabilities and their families need to be empowered, disabled people's organizations (DPOs) and parents' organizations need to be strengthened and duty bearers (such as government officials and professionals) need to build their capacity. This means that future CBR programmes should ensure support to these three spheres and facilitate input and collaboration between many stakeholders and sectors.

Donors and CBR implementing agencies should consider reviewing programmes and develop capacity in the light of the findings in this report. Complementary CBR training material and handbooks should be deve loped to meet the new needs and challenges.

Finally, it should be noted that CBR as a title no longer reflects the nature of the programmes implemented because

• they target many levels of society - not only the community level
• they address all issues affecting the quality of life of persons with disabilities - not only rehabilitation