FINDINGS

General observations

What is a successful CBR programme? Should it be measured by the quantity and quality of services provided? Or should it be measured in terms of the social change processes that it has managed to start? This study indicates that the strengths of the CBR programmes have mainly been found in the latter area. Whereas medical care and physical rehabilitation services are stillinaccessible to most persons with disabilities in the targeted areas, processes of empowerment and social acceptance have been initiated.

This study gives evidence that CBR programmes have started change processes in the communities targeted and brought about improvements in the quality of life of persons with disabilities in a range of areas. However, the number of communities and persons with disabilities that have been reached is still very small. Also, the expectation that the community (or the district government), once awareness was raised, would provide the necessary resources, basic services, simple assistive devices, etc., has not been fulfilled. It is obvious that CBR programmes need to be combined with other efforts and measures in society, integrated into mainstream community development programmes and supported by governments on a large scale, in order to bring about lasting and comprehensive improvements. DPOs and international organizations can play an important advocacy and capacity building role in order to achieve this.

It is encouraging that national policies on disability and new legislation are being discussed or have been adopted in all three countries under study. In Ghana there are new options to influence political priorities and resource allocation through the District Assemblies, in Guyana the Ministry of Health has recently entered into a new agreement with the CBR Programme, and in Nepal increasing media attention is being given to disability issues.

Stories told by the interviewees in this study illustrate many positive effects of the CBR programmes, but they also bring forward concerns about the efficiency and sustainability of the programmes.

Quality of life analysis

CBR programmes seem to have started 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:

• Self-esteem
• Empowerment and influence
• Social inclusion
• Self-reliance

However, impact is limited when it comes to

• Physical well-being
• Confidence and trust in society to fulfil its human rights obligations

Self-esteem

The study shows that CBR programmes have increased self-esteem as reported by persons with disabilities and parents of children with disabilities. Disabled people have become visible; they have shown that they can contribute to family life and in the community, irrespective of the type of disability. Typical statements were:

When analysing the reasons that could have brought about this change some conclusions can be drawn, though they differ for each group:

Parents become proud when their children improve their social behaviour, develop new skills and communicate better. In addition, they become proud when they are able to use their experience to help other parents.

Persons with disabilities increase their self-esteem when they are able to

• contribute to the well-being of their family, practically or financially
• maintain themselves independently
• contribute to the development of the community
• play an active social role
• prove their ability to perform well in school, develop useful vocational skills and earn an income

Being able to assist non-disabled people is highly motivating for self-esteem. One woman in Ghana has used her loan from the CBR programme to assist a whole group of women to purchase raw materials on credit. This has considerably increased her self-esteem as well as her social status.

For deaf and hearing impaired persons self-esteem and social inclusion are also connected to the ability to communicate. Access to a common and recognized sign language and to interpreter services is a precondition for recognition and inclusion in society as well as for enhancement of self-esteem and self-confidence. Hearing aids will not be affordable and accessible for the majority of hearing impaired persons in the countries studied in the foreseeable future.

Empowerment and influence

Most CBR programmes continue to be weak in these aspects despite the fact that CBR policy documents indicate the necessity of involvement and influence of persons with disabilities and their organizations. DPOs and persons with disabilities are seen as beneficiaries and not as participants with a voice and a choice. However, CBR programmes have empowered many individuals to cha llenge this situation. The following describes how disabled persons and their families regard the impact of CBR programmes on their empowerment and influence.

This is the feeling in Ghana:

"Before, we hardly knew each other. This has changed. When I got to know about the Association I realized there were others like me. I am always happy to attend meetings because of the companionship. I have been able to get advice, companionship and play an advocacy role."

"CBR has assisted the Association immensely since it has enabled us to get funds, and mobilize members. The three Associations (of the blind, the deaf and the physically disabled) work hand in hand in our district. The CBR programme has been able to encourage DPOs to form a common platform on which they present common issues and chart a common course."

Parents in Guyana:

"Since I know about CBR I have learned a lot. I learn that there are many other disabled children so that mine is not the only one and with my experience I can advise other parents. Because for sixteen years I have had to deal with my child so I have a lot of experience. So that whatever I have learned from CBR I can share with younger parents on how to keep the child entertained and not to keep him home so that he can get to interact with others. Before that I usually kept my child at home for fear that someone would laugh at him, only his parents could have communicated with him. It is really nice to be associated with CBR."

"I think that the policy-makers understand that they cannot make decisions for us without consulting us who are in the situations and knows exactly the way it feels."

In Nepal:

"Before the CBR was launched in this village we didn't know the number of disabled people living in this community. We only saw them and knew about their disabilities. But now we have a strong relationship among ourselves. We can do everything according to our desires. We came to know that my disability is different from hers or his, but in one way or another we support each other, which we have learned through the CBR Programme's guidance and support."

"We can do everything through this Disabled Organizational Development Group (DODG) unity. We can fight for our rights in this community. If anybody hampers our way of progress we can tackle them and stop them from doing anything negative on our part. If somebody says 'you are this or that' we can go through this DODG and convince them that you should not say that."

When analysing the possible contributions to this increased empowerment the following was compiled:

• Creation of meeting places where persons with disabilities and parents of children with disabilities can share experiences.
• Sharing of common experiences of difficulties and discrimination as well as possible solutions to overcome these problems.
• Self-reliance that makes it possible financially and physically to attend meetings.
• Leadership training that has increased confidence and self-esteem.

Despite this empowerment there is a strong feeling of having a long way to go before influence is achieved. Many persons with disabilities give evidence that much is said verbally and in policy documents about the participation of persons with disabilities and DPOs but, in practice, persons with disabilities are seen as passive beneficiaries and are not considered for employment, appointments, study visits and training opportunities in the CBR programmes. Nor are they considered as resource persons or teachers. It was pointed out that persons with intellectual disabilities and deaf persons have an additional disadvantage owing to their communication problems.

Social inclusion

Numerous stories illustrate how social inclusion and acceptance have improved for all disability groups as a result of the CBR programmes.

When analysing the reasons for the changes in social acceptance the following emerges as the most important:

• Persons with disabilities become visible when the CBR programme starts asking questions about their situation.
• Persons with disabilities have shown the community that they have skills and can contribute to family life and earn an income.
• Persons with disabilities have attracted attention from NGOs and government authorities which benefits the community.
• Community leaders and members have been informed about disabilities, their causes and the way to support children and adults with disabilities.

It should be noted that the single most effective tool to change social norms and values is through successful role models. To be "successful" means performing well as regards income generation and practical, social or academic skills. This may put pressure on children and adults with disabilities who are pioneers in schools, training schemes or workplaces.

For children social inclusion is also about being accepted in school. No doubt CBR programmes have impacted on the number of children being enrolled in ordinary schools. However, parents and DPOs have mixed feelings about the impact of inclusive education. For some children it has meant humiliation, low self-esteem and social exclusion, while others have experienced benefits.

Deaf persons depend on a sign language environment in order to be able to enjoy social inclusion. This is seldom accommodated in CBR projects. The Associations of the Deaf can play an important role in the social life and development of sign language skills of deaf persons if given support to do so. In Ghana the CBR programme has been instrumental in facilitating the creation of local deaf associations. In Ghana and Nepal the CBR programmes have an important role in identifying and referring persons to these associations.

Self-reliance

CBR programmes have impacted positively on the self-reliance of many children and adults with disabilities. Firstly, training in daily living skills has been helpful. Some of the statements were:

When analysing the reasons for the positive impact on personal self-reliance it was noted that social counselling and advice on daily living skills and mobility were the most important factors. Provision of assistive devices or physical rehabilitation was not mentioned as a contributing factor to self-reliance. The woman in the example above who had a received a wheelchair is an exception. She received her wheelchair as a gift from Sweden - not through the CBR programme. Her wheelchair is now out of order because there are no spare parts in Nepal.

Secondly, self-reliance has been achieved through skills training and loan schemes as the following statements show:

When analysing the reasons for the positive impact on financial self-reliance the loan schemes were reported to be the single most important influence. Although many interviewees thought the loans to be too small they were appreciated even more than the skills training because:

• Even without a vocational skill, animal keeping is an option to improve socio- economic status. A loan to buy chickens or goats can be a turning point.
• Many disabled persons are able to find apprenticeships on their own but then fail to create a business owing to lack of starting capital.
• Some persons with disabilities also complain that the skills training given through the CBR programmes is not efficient and that there are preconceived ideas as to the type of skills training that is suitable for particular disabilities.

Physical well-being

The physical well-being of persons with disabilities has not been influenced much by the CBR programmes. Early interventions are rarely made and traditional medicine is still the first option in many cases, as indicated by the following statements:

When analysing the reasons for this situation it can be concluded that

• health professionals still have little knowledge about diagnosing or treating different conditions
• medical care is not accessible because of high costs

Positive reports come from Nepal where the CBR project actually pays the bills for hospital treatments and assistive devices. This has benefited some individuals. However, paying bills for individuals is not a sustainable method that can be brought to scale.

Furthermore, physical rehabilitation efforts and assistive devices offered at the community level seem to be either non-existent or of poor qua lity. Typical examples were:

When analysing the reasons for this situation the following influences were mentioned:

• Physical rehabilitation and production of assistive devices seem to be more difficult than anticipated and are not handled easily by community volunteers.
• Referral units are inaccessible owing to distance or cost.

Confidence and trust in society

This has been one of the weakest points in the CBR programmes. Persons with disabilities (and their families) notice that, despite supportive words and new policies, in practice little is done as regards resource allocation, neither in families, communities and government bodies, nor in international development assistance. Persons with disabilities and their organizations have concluded "we have to help ourselves" and "without us nothing will happen". They are no longer satisfied about depending on the goodwill of others. They have seen volunteers lose interest and commitment, CBR committees dissolve, and governmentsand international organizations break promises. It is not surprising that many interviewees are discouraged about the possibility of getting the support to which they are entitled from governments and communities. Most of them put their hope in INGOs. Here are some comments:

When analysing the reason for little improvement in confidence the following has emerged:

• Many communities are extremely poor and there are no resources available to guarantee everybody their rights.
• The few businessmen who can afford to donate become exhausted.
• Moral support is easy to give. It does not cost and it makes you popular. When resources are requested it becomes clear that the commitment had its limits and that other issues have higher priority.

Analysis of CBR programme initiatives

Looking at the different CBR programme initiatives used to achieve the positive impact on quality of life it can be concluded that the initiatives perceived as the most useful by persons with disabilities were (in order of priority):

• social counselling
• training in mobility and daily living skills
• providing or facilitating access to loans
• community awareness-raising
• providing or facilitating vocational training/apprenticeships
• facilitating the formation of local self-help groups, parents' groups and DPOs
• facilitating contacts with different authorities
• facilitating school enrolment (school fees and contacts with teachers)

If these views are put into the context of the Standard Rules the following can be concluded about different CBR programme initiatives.

Awareness-raising

Awareness-raising is perceived as an important and successful part of the CBR programmes that has impacted on the quality of life of disabled persons.

It is mainly the following awareness-raising methods that have brought about change:

• social counselling to families and individuals
• exposure of role models, e.g. persons with disabilities, who are seen to be socially and materially "successful"
• dialogue and information dissemination at community meetings
• empowerment workshops for persons with disabilities and their families

Some of the interviewees point out that:

• The best awareness is created by persons with disabilities themselves.
• Drama is a powerful tool to make people see prejudices.
• Traditional workshops and seminars are not always efficient. Seminars for government staff seldom lead to changes if not combined with practical on-the-job training and rewards for improved practices.
• Media is a new avenue for information dissemination as increasingly more people access radio and television.
• Pop stars and sport stars are under-utilized as advocates.

Medical care

CBR programmes seem to have failed to bring on board the health authorities and few tools remain to provide medical assistance. Only in Nepal, where the CBR programme has paid medical bills, do persons with disabilities report increased access to medical treatment. However, traditional practitioners still remain the first option for most persons with disabilities, which also hampers early detection. The following statements give voice to the view of disabled persons and their families:

Medical health care systems are reported to have the following problems:

• Primary health care lacks competence to make correct diagnoses and treatments.
• Treatment is not free.
• Referral specialists are inaccessible owing to distance or cost.

The Ministries of Health are responsible for these shortcomings and should address the training needs as well as the issue of subsidizing treatment. As long as the modern health care system offers no satisfactory options, traditional healers will continue to be the first option in the communities, meaning that early interventions will not be made. It should be recognized that medical care requires resources and knowledge that are not normally available at the community level.

Rehabilitation and support services

Physical rehabilitation and provision of assistive devices are not perceived to be successful initiatives of CBR programmes. It was not foreseen that there would be such difficulty in providing these services at community level and the referral systems are still inaccessible or non-existent in most places. As one DPO representative in Ghana put it:

Local production of assistive devices or physiotherapy equipment has not been an original part of the CBR programmes. It sometimes takes more skill to improvise and design the right device from local material than to produce the technically advanced device. In general, devices continue to be produced in only a few centres in the country or they are imported. This makes them too expensive for most persons with disabilities.

In addition, skill is required to design physiotherapy exercises and to use equipment. Without professional back-up and referral systems it has been difficult to keep pace. Few CBR workers have sufficient skills to provide relevant, quality advice on physiotherapy or rehabilitation techniques, or to design assistive devices. A few days of training without follow-up are not enough. As some parents indicated:

However, in all three CBR programmes social rehabilitation and counselling were mentioned among the most important and successful of the CBR programme initiatives that achieve improved qua lity of life of persons with disabilities and their families. The most appreciated initiatives were

• social counselling
• practical daily living skills training
• mobility training

Unfortunately, counselling and training are frequently limited to persons who can communicate. Intellectually disabled and deaf persons may be neglected. CBR workers generally do not know how to communicate or to learn about their needs. However, the sign language classes in Ghana and Nepal, organized in collaboration with the Associations of the Deaf, are reported to be contributing greatly to quality of life of deaf and hearing impaired persons, especially perception of self-esteem and social inclusion.

Education

Facilitating access to education in ordinary schools has been an important part of all CBR programmes studied. School fees, books and uniforms have been subsidized and teachers have been trained. In Ghana there are peripatetic teachers to support the ordinary schoolteachers. For many children this has contributed greatly to their quality of life, but not for all. Success is reported mostly for children with physical disabilities or minor impairments. The views on inclusive education among persons with disabilities and their families vary. Although the concept of inclusive education is well accepted its implementation is a controversial issue.

The stories told in this study give evidence of how inclusive education can be either helpful or harmful, depending on the disability of the child and the resources of the school. The reality that most parents and children face is a school where classes are big, material scarce, the syllabus inflexible and teachers insufficiently trained in learning methods and styles. In order to cope in such an environment the child requires a supportive home environment, good communication skills and little need of special measures from the teacher; otherwise the risk is great that schooling will increase exclusion and low self-esteem.

Persons with disabilities and parents were concerned about the situation of blind and deaf children, as shown by the following statement:

Some parents, especially parents of children with intellectual disabilities, feel that their children should rather learn a skill that can be used for income generation, while the majority feel that formal education is even more important for a child with a disability:

The interviewees in this study emphasized the need for

• sign language classes for deaf children and for family members
• parent-driven community centres for intellectually disabled children focusing on skills training and care
• activities of daily living (ADL) and Braille training for blind children

It was suggested that these initiatives be strengthened in the CBR programmes.

Income maintenance and social security

According to the findings in this study income generation is the most appreciated CBR programme initiative, together with awareness-raising. Income generation positively impacts on almost all aspects of quality of life identified in this study; self-esteem, social inclusion, self-reliance, physical well-being, empowerment and influence. Some statements illustrate this:

The CBR programmes have provided skills training, organized apprenticeships and access to revolving loan schemes. This study clearly indicates that the loans are considered to be the most essential part of income generation initiatives. Access to finance is a common problem in the communities, but has been particularly difficult for persons with disabilities. The CBR revolving funds have been an opening, but the amounts provided are very small and in Ghana it can only be used for purchase of raw materials - not for tools and equipment. In all three countries credit schemes are also part of other ongoing NGO and poverty reduction programmes. Interviewees suggested that future CBR programmes should facilitate access to these loans in addition to the ones targeted especially to persons with disabilities. Collaboration with DPOs in accessing bus iness ideas and monitoring the loan schemes was also suggested.

Vocational training has been an appreciated part of the CBR programmes as well. However, the following has been pointed out:

• Apprenticeships are often more useful and efficient than the training given in vocational training centres.
• Without starting capital for tools and material there is no means of creating a trade after the training.
• Employment is still not an option for most persons with disabilities because positions are few and prejudices still vivid.
• The training provided is not innovative but follows preconceived ideas about what disabled persons can do.

In Nepal women who had been trained in tailoring said:

It was noted that in Guyana, the income generation is geared towards the parents, which indirectly benefited the children. However, it has been a challenge to move on and address the needs of young adults to become self-reliant. A parents' organization naturally looks at the programme from the parents' perspective and primarily considers their particular needs. CBR programmes seem to have difficulty in addressing the needs and rights of persons with disabilities in a holistic and multisectoral manner if steered by a particular interest group or government sector.

Government and community commitment

This study shows that community and government involvement so far has been limited to moral support. Apart from a few examples where individual school fees and income generation initiatives have been subsidized there are no substantial contributions by communities or local/district government authorities. It is obvious from this study that CBR is a powerful strategy to start processes of change in communities. However, in order to make these processes sustainable governments need to take responsibility and to play their part.

The stories told by persons with disabilities in the three countries show that there is a limit to what attitudes, goodwill and voluntary efforts can do.

There is an urgent need for CBR programmes to ensure that governments:

• Include persons with disabilities in ordinary community development programmes and poverty reduction schemes.
• Provide community workers with back-up, continuous training opportunities and incentives.
• Support a referral system at district level.
• Provide training and resources for education and health systems.
• Provide assistive devices free of charge.
• Support sign language development and interpreter training.

Support to DPOs

In general, the CBR programmes have been weak in supporting the capacity building of DPOs. Only in Ghana have strategic efforts been made to build capacity of the DPOs, but still the CBR programme is criticized for not doing enough. In Guyana the CBR programme is focusing on the parents of children with disabilities. In Nepal the support is confined to the community self-help DODGs that have no formal links to the disability movement in the country.

Strong DPOs are essential for realization of the rights of persons with disabilities. The importance of involving DPOs as key stakeholders will increase as CBR develops from being mainly a programme for provision of rehabilitation services to being a programme that promotes human rights of persons with disabilities and an inclusive community.

DPOs can play the dual role of advising and pressurizing the government authorities and empowering their members. However, many DPOs need strengthening to develop a wider support base, a democratic and transparent structure and a more strategic approach so that they can effectively take on this role. Presently, DPOs often promote the specific needs and rights of a particular disability group rather than an inclusive community for all citizens. This study has shown that there is a need for cross-disability collaboration to ensure effective work. Organizations of the physically disabled, the visually impaired and to some extent the deaf are strong advocates for their own groups, but persons with disabilities that do not fall within these categories, especially the intellectually disabled, do not have any spokespersons. Furthermore, it is mainly the issues defined by adult men that are given priority. Therefore, women's organiz ations and parents' organizations must also be assisted to build capacity and to have a voice. Joint platforms are thus needed at community, district and national levels to promote issues of common interest.

CBR programmes should take these findings into consideration and include a comprehensive empowerment package for DPOs as part of their programme initiatives.

Main concerns

Although the CBR programmes studied show that impact of the CBR programmes on quality of life of persons with disabilities has been substantial in the communities targeted there are some concerns:

1. The three CBR programmes studied here have managed to reach very few communities and people during their 10-15 years of existence. To date, only a few thousand people have been reached by the three programmes, out of an estimated population of persons with disabilities of more than two million in the three countries. Even in Ghana where the programme is a national government supported initiative, the number of disabled persons reached is very small.
2. Even in communities reached by the CBR programmes it seems that only half of the disabled population have benefited from these programmes. In Ghana and Nepal the huge majority of persons benefiting are those with moderate physical disabilities, while persons with intellectual or communication difficulties are poorly represented. The Guyana study, where parents have been targeted, gives a different picture: children with intellectual disabilities and hearing impairment seem to be the major group that has benefited from the programmes.
3. On average approximately 45% of the persons reached by the CBR programmes are physically disabled, 20-25% are visually impaired, 15-20% are deaf or hearing impaired and 5% intellectually disabled. The rest have other types of disabilities. Only in Ghana have persons with other types of disabilities such as epilepsy or psychiatric problems been specifically targeted. CBR programmes understandably start by approaching persons where communication is easy and where special educational measures and expensive medical treatment are not needed. This creates frustrations among the groups of persons with disabilities who are not prioritized - often those who have the greatest needs for support.
4. CBR programmes largely continue to regard persons with disabilities as beneficiaries and not as participants with a voice and a choice. Any influence by persons with disabilities and their organizations in the CBR programmes is limited. However, in Ghana where support has been given directly to the capacity building of DPOs (from the CBR programme as well as from Action on Disability and Development - ADD - and other NGOs) the situation has improved.
5. The sustainability of CBR programmes is of major concern. This study has shown that:

• Voluntary community workers are difficult to sustain without support and incentives.
• Specific committees formed for the sole purpose of managing and supporting CBR programmes seem to die when the committee members do not benefit from the programme.
• Anticipated community resources have not been forthcoming to support the programmes.
• Government authorities have seldom allocated resources in support of CBR programmes and referral systems.