AN OVERVIEW OF CURRENT STATUS AND FUTURE TRENDS OF CBR IN NEPAL Jane Schofield Gurung* INTRODUCTION In terms of development and resources, Nepal has many problems, even when compared with other developing countries. It ranks 152nd out of 174 countries on the UNDP Human Index (1). The total population of the country as of 1996 was 21,100,000, of which the female population is 10,530,000. 90.3% of the population lives in rural areas and over 80% are dependent on agriculture. However, food production is insufficient to meet the demand, and food has to be imported. 14.7% of the population are 0 - 5 years of age, while 42.4% of the population are 0-14 years of age. Life expectancy at birth for men is 57 years and for women, 56 years. The maternal mortality rate is 850/100,000, the infant mortality rate is 102/1000, and the under five mortality rate is 121/1000. The GNP per capita (1994 figures) is US$200. Nepal has many problems relating to provision of health care, education, and the economy in general. For the average person, there is limited access, if any, to health care, education and training or work opportunities. These factors affect not only the normal population, but also disabled people and their families. About 90% of the population live in rural areas, many of which are still relatively inaccessible. This presents a challenge for the provision of services, access by disabled people, and in some cases, may increase the handicap. The inflation rate is high (15% in March 1999), and average income is still low, with many going abroad to work, resulting in social changes such as single parent families. Since democracy was re-established in 1992, there have been 6 changes of government, and there is an increasing unrest with the political situation. Though development work is on-going and there has been some progress in some areas, it has been slow in many other areas. For disabled people and their families, the situation is therefore doubly difficult, due to the general problems affecting everyone, and due to the specific aspects of disability and social stigma. DISABILITY IN NEPAL There is great uncertainty and debate about the prevalence rates of disability in Nepal. No national statistics are available, and estimates of percentages range from 1.5% to 20% (2). The most recent estimate is from a local survey by the Special Education Unit in 23 districts, which showed 5.2% of the population to be disabled (1). A national survey is now being planned. The wide range in prevalence figures reflects the variation in the definitions of disability. Many cultural factors influence the definition of disability in Nepal, and even within communities there may be differences in definitions (3). As in many countries, there is still a considerable amount of social stigma for disabled people and their families. Also, it is hard to identify specific causes of disability, as they may be multi-factorial, including poverty, the influence of poor antenatal, postnatal and general health care, malnutrition, accidents, and other social factors such as the low status of women. Relatively little attention had been paid in the past to prevention, but it is now increasingly emphasised in government and other development activities. LEGISLATION In Nepal the situation regarding legislation is similar to that of many countries where there is legislation about disability rights, but the implementation is difficult and almost non-existent in practice. The government provides some personal allowances for disabled persons, and there are some financial allocations for disability work, but in practice, this is hardly ever used. The approach is very 'welfare' orientated, rather than a 'training and enabling' approach. However, more projects are now attempting to utilise the existing allocations (4). WHO IS INVOLVED IN REHABILITATION Most of the disability and CBR work going on in Nepal is carried out by Non Government Organisations (NGOS), Disabled People's Organisations (DPOs ), international NGOs, national level organisations, local groups (e.g. trade, community) and His Majesty's Government (in the field of special education). There is wide diversity in programmes (5), for example, some organisations work in large geographical areas, some in limited areas, some with single disability client groups, and some with multi-disability groups. Disability as a specialist development sector has existed for a long time in Nepal, ever since few small projects were set up in the 1960s. Since then, there has been expansion, in terms of number of projects and areas covered, though most are located in the urban areas (6), particularly within the Kathmandu valley (7). There is now a large group of organisations involved in the disability scene nationally. Though many use the term CBR, the organisations involved in fact include institutions, community outreach services, self help organisations, general development or human rights organisations, and welfare organisations. There is scope for the involvement of all these different types of organisations, each of which has some skills and expertise to offer. What really exists is a disability related network, which is addressing wider issues at many levels. Another advantage of this wide network is that it has also effected a change in disability services to bring it out of a narrow and often medical context, to emphasise the social and development aspects. If one looks at the history of disability work, much of it has come from a medical background. Many projects emphasise 'rehabilitation' aspects more than the 'community' aspects. This is true in many places, with Nepal being no exception, even though all aspects are needed to provide for the needs of people with disability and their families (8). UNDERSTANDING CBR IN NEPAL With regard to the involvement of people with disabilities in rehabilitation projects, there is a mixed picture. There is a growing number of 'self help' groups and Disabled People's Organisations (DPOs), for different disabilities. There are many organisations set up by able bodied people, who are providing 'services' for people with disabilities. There are also organisations which have a more process orientated approach, that include people with disabilities and their families in decision making roles, resulting in an integrated system, in which disabled and non disabled people work together. Improvement in the quality of life of PWD is the single most unifying goal of all the projects involved. Some projects have been set up specifically for disabled people, while others are part of more general development activities. Many projects work towards changing attitudes and building awareness. Community participation in disability activities can be quite hard to achieve, depending on the nature and the needs of the community in general. Some communities may support a programme with a charity approach, and are less concerned with the empowerment of people with disabilities. The projects vary widely in terms of the nature of services provided, the types of disabilities and the age groups of the clients. Most projects work with limited groups, such as physically disabled persons alone, depending on the availability of specialist skills, needs and resources. The age group of clients also varies widely, though most projects in Nepal do have specific age criteria and different types of services for different age groups. Even though this form of segmentation is not ideal, it is defined by limited resources, donor criteria and so on, and sometimes by the available referral patterns. Sensitivity to the position of women and girls in Nepal is an issue which all the organisations are aware about, but again in practice there is a wide range in the levels of implementation. Overall, relatively few women are employed in the disability sector, either in management or field staff positions, though it is recognised as important to ensure the relevance and effectiveness of work in the community (9). Flexibility in planning and operations is evident on a national basis, with many diverse types of projects and organisations. However, within the individual organisations there is some rigidity in methods due to external influences such as donor criteria, and internal factors such as organisational structure and working methods. Co-ordination of various kinds of local service delivery can be difficult. In many situations in Nepal local services are not available or easily affordable. In other places, the opposite situation may prevail, with many organisations competing with each other, as to who should do what. Better networking and co-ordination in planning of services between different organisations can improve this situation and strengthen individual programmes. PROGRAMME COMPONENTS OF CBR Programme components of CBR in Nepal show great variation between projects. Some focus almost totally on the provision of rehabilitation services in a medical model, and provide specialist skills and expertise. Some have a wider approach, including other components of interventions, or referring to other organisations to do so. Some organisations set up their own activities for specific groups of clients, while others have a more integrated approach and try to include people with disabilities in opportunities provided by organisations outside the disability sector such as women's development groups, other community development projects, and so on. The Government's work in the disability sector has been mainly in special education. The present system is now under review, and providing special education remains a great challenge in the light of the poor, though improving, standards of the general education system, and the practical problems of geographical access to schools, attitudes towards education and so on. For example, only 30% of girls attend school. Some projects have their own schools or day care centres, and most of the services for children with learning disabilities have been of this type. There are some other special schools for specific types of disabilities such as the deaf schools. Many projects are working on a more integrated or inclusive approach, according to the needs of the child and the available local resources. A pilot project is also in the planning stages to identify ways for CBR projects to work more effectively with the Special Education Unit. Providing opportunities for income generation and vocational training is a challenge, with the high general rate of unemployment and poverty. Some projects have their own skills training programmes, and also provide employment opportunities themselves, while others use a more integrated approach by linking up with other organisations who can help with training. Provision of care facilities relates mostly to day care facilities in urban projects, whereas in the rural areas it is hard to provide such facilities due to difficulties in travel through the hilly terrain. Some projects provide some residential care, mostly linked to training. A common experience is that if someone is moved away from his family home and social support, then it becomes difficult for him to return there later. The idea of respite care is not widely known or used in Nepal. Effective management systems are vital for good services at all levels. In Nepal, in the NGO sector, management is an area where many projects experience problems. One of the aims of the original CBR national networking for project co-ordinators which was started in 1994, was to develop higher standards of management. DIFFERENT STAKEHOLDERS IN CBR Most people involved in CBR in Nepal are not disabled, though there is now an increasing number of people with disabilities involved in disability specific projects. Community development organisations are starting to become more involved in disability projects, but in general, disability is still regarded as a medical or health problem rather than a social problem. The private sector input is mostly based on charity and welfare. Most projects work with paid staff and experience of using volunteers is limited, and in reality, only possible in urban areas. In Nepal, where many communities are facing challenges such as poverty, lack of food production, poor health and education facilities, disability is regarded as a low priority, particularly when viewed in a medical model. However, there is now a move to address disability rehabilitation in terms of prevention, and from a sociological point of view, including it as a part of the general development activities (10). Since the initial networking in 1994, there has been effective national networking and building up of relationships between an increasing number of organisations in Nepal. Conferences have been held every six months on an average, and totally 5 workshops have been conducted to develop a national strategy, the last two involing the government. A national CBR News Bulletin has been regularly published. Nepal has also been actively involved in networking at the South Asia level. Since 1998, the National CBR Network has been officially registered, thus starting to function as an umbrella organisation. The overall aim is to "bring positive impact to people with disabilities in socio-economic status, environment, health and human rights issues". Initially, the number of member organisations has been small, but it has been expanding gradually. The main activity so far has been to work towards a new national strategy for CBR work, involving the Government. Another development is the establishment of a National CBR Resource Centre, which can play a complementary role to the umbrella organisation, and be of support to individuals and projects by supplying information, co-ordination of training, documentation, and so on. For example, there is a move towards getting a nationally recognised qualification for CBR field workers. Local networking is also going on very effectively in certain areas where there are a number of organisations nearby, who are able to co-operate and work together. For example, in Kaski District there are now 17 organisations meeting on a regular basis, including those working with different types of disabilities, DPOs and community development organisations. In their meetings there is sharing and updating on activities of each project, as well as presentations and discussions on related topics. These meetings have helped in referrals and for activities of common interest such as a programme for International Disability Day. The increasing trend for organisations with some interest in disability to become members of national and local networks will probably bring in more resources as well as competition for resources in this sector. At the same time, the issue of disability is becoming more widely known, being included in general development programmes, and participation of people with disabilities in influencing policies and strategies is increasing. Sustainability, however, is a challenge facing all projects. The future trend will be the need to face the challenges facing individual projects and programmes, and to work together to achieve the national vision for CBR ; 'A society which respects the rights and dignity of people with disabilities, giving them equal opportunities to fulfil their potential and become contributing members of their society' (11). CONCLUSION Community based rehabilitation has 'mushroomed' recently in terms of numbers of organisations and projects involved, has changed its emphasis in terms of key players, and has developed in terms of organisation and structure. There is a great variety and diversity of projects and organisations working with and for disabled people, in the disability sector and increasingly in the development sector. The participation of people with disabilities and of the government is also increasing. With the national network organisation, national resource centre, national strategy paper, development of staff training, and the progress in special education policy, much has been achieved in recent years. Great challenges also still remain to be faced. *CBRS, PO Box 293, Pokhara, Nepal. ACKNOWLEDGEMENT The author would like to thank colleagues from CBRS and members of the local and national networks for helpful suggestions and advice. REFERENCES 1. Hospital and Rehabilitation Centre for Children. Annual Report, Kathmandu, 1997 2. National CBR Network. National Strategy Planning Conference Reports. Kathmandu, 1998. 3. Devereux G. Disability in Rural Nepal. MSc paper, University of Liverpool, UK, 1996 4. Schofield-Gurung J. Introduction of CBRS. National CBR News Bulletin 1998 5. Miles M. Different ways of community based rehabilitation. Tropical and Geographical Medicine 1993; 45(5): 238-241 6. Prajapati SB. Status Paper on CBR in Nepal. Bhaktapur CBR Project, Bhaktapur, 1997 7. Valley Research Group. Study on a situational analysis of disability in Nepal. Kathmandu : UNICEF, 1996 8. Jones H. Towards a 'child focused' approach - the development of a community based disability programme. SCF (UK) : SEAPRO Forum 1996; 4, 2. 9. Boyce W, Malakar S, Millman R, Bhattarai K. Physically disabled children in Nepal : A Follow up study. Asia Pacific Disability Rehabilitation Journal 1999; 10(1): 20-26 10. Centre for Disability and Development. Implementing CBR : Community approaches to handicap and disability. Dhaka, 1998 11. National CBR Network. National strategy on CBR. Kathmandu, 1999. |