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INTRODUCTION

Background to this study

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. CBR has been included in the policy agendas of several governments internationally and has been used by nongovernmental organizations (NGOs) and United Nations (UN) agencies as a programme approach. Managerial workshops have been conducted and special instruments have been created for the monitoring and evaluation of its practicality and effectiveness. Evaluations of CBR programmes have been performed in several countries - most using quantitative impact assessment methods with a focus on service provision levels.

The CBR strategy has also been discussed with the UN Special Rapporteur on Disability and his Panel of Experts, as well as with international nongovernmental organizations (INGOs). In these discussions it has been emphasized that, according to the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities1, disabled persons should be active partners in the planning and implementation of all measures affecting their civil, political, economic, social and cultural rights. Based on these consultations and observations of the gaps in previous evaluations, SHIA and 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.

SHIA and WHO have taken their initiative to a joint project to study the impact of CBR programmes on the quality of life of persons with disabilities. The study includes the following steps:

  • Collect information in order to select relevant CBR programmes for the study.
  • Identify three countries to participate in the study.
  • Draw experience from previous CBR evaluations in these countries.
  • Make field studies in three countries in order to enquire about the changes in the quality of life and perception of persons with disabilities.
  • Support the undertaking of a self-assessment by the communities where a CBR programme has been implemented.
  • Prepare a consolidated report and recommendations on how the participation and quality of life of persons with disabilities in CBR could be increased and strengthened.
  • Translate, publish and distribute the consolidated report.

Understanding CBR

CBR is a concept that has been interpreted in different ways by the various agencies and NGOs. The concept has also developed gradually and at times there has been great confusion about the meaning of "community-based rehabilitation". CBR started as a strategy for delivery of primary rehabilitation services to persons with disabilities in their communities. The current understanding is that CBR is a community development programme, which is multi- disciplinary and addresses all areas that are central for the improvement of quality of life of persons with disabilities:

ILO, UNESCO and WHO Joint Position Paper 1994

Community-based rehabilitation (CBR) is a strategy within community development for the rehabilitation, equalization of opportunities and social integration of all children and adults with disabilities. CBR is implemented through the combined efforts of disabled people themselves, their families and communities, and the appropriate health, education, vocational and social services.

In a 1997 Economic and Social Commission for Asia and the Pacific (ESCAP) statement called "Understanding CBR", it was concluded that CBR programmes should be based on the following criteria2:

  1. Persons with disabilities are included at all stages and levels and have distinct decision-making roles.
  2. The primary objective is the improvement of the quality of life of persons with disabilities. In order to achieve this, CBR programmes focus on
  • eliminating stigma and increasing the recognition of disabled persons as resourceful members of family and society;
  • making the environment and existing service delivery systems accessible to persons with disabilities;
  • supporting persons with all types of disabilities (physical, sensorial, psychological and mental, leprosy, epilepsy, etc.) according to their specific needs.

The same ideas are reflected in the revised joint position paper on CBR from the UN Agencies3. In this paper increased emphasis is given to aspects on human rights and community partic ipation. CBR is seen as a strategy to achieve equal opportunities and full participation of disabled persons, addressing a wide range of obstacles to their participation in society. The word "rehabilitation" is seen as too medical and narrow and no longer reflects the CBR concept. CBR is seen as a strategy to promote the rights of persons with disabilities to enjoy health and well-being and to participate fully in educational, social, cultural, religious, economic and political activities. CBR benefits all people in the community because an accessible and human rights sensitive environment makes life easier for everyone. The position paper introduces the term "inclusive communities" meaning that the focus is on the human rights of all citizens, including those with disabilities.

The position paper also recognizes the UN Standard Rules as an important tool for promoting the rights of persons with disabilities. The participation and influence of disabled persons on the individual level as well as on the organizational level are emphasized and are seen as a precondition for the successful planning, implementation and monitoring of CBR programmes. Rehabilitation is viewed as a process in which persons with disabilities or their advocates make decisions about the services they need to reduce limitations in their activities.

Finally, the position paper examines the lessons learnt from implementing CBR programmes and concludes that the following factors are essential for sustainability of CBR programmes:

  • recognition of the need for a CBR programme based on a human rights approach
  • willingness of the community to respond to the needs
  • availability of resources and support, from outside the community
  • multisectoral collaboration, including collaboration with DPOs and NGOs
  • presence of community workers
  • integration of CBR within government with allocation of adequate resources

Most CBR programmes do not operate in an environment where all these preconditions are fulfilled. In order to achieve better results there is a need to review strategies and to increase commitment and collaboration among all sectors and levels of government and civil society.

Analysing the impact of CBR

It is difficult to find a standard model or approach to assess impact as the concepts in CBR have evolved. Often there has been no baseline study, and no indicators for input, process or output have been established. Most of the CBR programme evaluations to date have been quantitative and have measured changes in service levels as perceived by staff and volunteers in the programmes. However, this study attempts to examine the impact of CBR programmes as perceived by disabled persons themselves. It is a mainly qualitative study which analyses the perceived improvements in quality of life of the persons with disabilities who are participating in the CBR programmes and their views on the usefulness of various CBR initiatives. The study has been using a qualitative participatory research approach (PRA) method.

The study is not attempting to evaluate the different programmes in relation to their particular objectives. Instead it attempts to compile and analyse the experiences of persons with disabilities in some programmes with different aims, structures and strategies. The experiences of the persons participating in the study have been analysed in two ways:

  • according to the perceived improvements in quality of life
  • according to the perceived usefulness of different CBR initiatives

Analysing quality of life

Defining and measuring quality of life have been the subjects of much research4 5 6. Discussions have included the extent to which quality of life is subjective and related to culture and personal perceptions, and the extent to which objective, general indicators can be used to measure quality of life across cultures and individual situations. Even without studying the research it seems obvious that many of the indicators of quality of life must be subjective and that qua lity of life will be perceived differently by individuals according to their age, personality and individual experience.

In addition, "equal opportunities and full participation", which is the overall goal of the UN Standard Rules and many other disability programmes, is not easy to measure as it can be interpreted according to local cultural norms and values. In many developed countries, for example, people are equal and can participate when they achieve the status of being independent individuals, free to make decisions about their own lives. In many African and Asian rural communities, people are equal and participate when they are an integral, contributing member of the family and community, able to play a role in the social and economic development of these entities.

The question then arises as to whether it is possible to measure quality of life at all. In the Consensus Document5 prepared by IASSID for WHO, the core ideas that have emerged in the international literature are summarized and a framework for how quality of life could be understood and measured is provided. These ideas include (authors' interpretation):

Domains of well-being. Quality of life is described as an aggregate of different, interrelated aspects of life. These aspects can be organized into domains. Researchers use various classifications. In this document eight domains of well-being are suggested:

  • Emotional well-being
  • Interpersonal relations
  • Material well-being
  • Personal development
  • Physical well-being
  • Self-determination
  • Social inclusion
  • Rights

Inter- and intra-personal variability. Variability means that the domains of well-being will apply to, or be experienced by individuals and cultural groups to varying degrees. A good quality of life means different things to different people.

Personal context. People are best understood within the context and environment important to them - where they live, work and play. Environments should be adaptable so as to accommodate personal interests and needs. Interventions should be directed towards people, places and surroundings that can promote and enhance a full life.

Life span perspective. Quality of life includes a life span perspective. Support and services denied during childhood can affect quality of life later in life and thus have cumulative effects.

Holism. This means that all the domains of well-being are interrelated. Particular aspects or domains of an individual's life may dramatically influence other domains. These inter- linkages must be carefully taken into account when designing programmes.

Values, choices and personal control. Quality of life recognizes different value systems and accepts that choices and personal control over activities, interventions and environment have major implications for self-image, motivation, self-expression and health.

Perception. An individual's perception about his or her own quality of life is important. There is no correct or incorrect response. Sometimes it is important to take into account the perceptions of parents, spouses or service providers. However, it should be noted that these perceptions might differ appreciably from the perceptions of the individual. Thus, it is a challenge to develop methods to communicate directly with intellectually disabled persons and children who, in the past, have been unable to provide input themselves.

Self-image. The aims of all quality of life programmes must be to enhance the individual's self-image and to provide empowering environments, which enhance opportunities to control the personal aspects of life.

Empowerment. Quality of life assumes major control by the service user over services provided and interventions designed. Detailed examination is needed to discover who controls the programmes and interventions to ensure that this can happen.

The Consensus Document concludes that there are both objective and subjective quality of life indicators. Objective indicators can be reliably observed and measure, for example, material attainment, stability of human institutions, social connections and life opportunities. Such indicators can be measured in quantitative studies. Subjective indicators measure quality of life, as it is understood and valued from the individual perspective, and identify those specific aspects that become valued by individuals as they pursue their lives in their unique environments. These indicators are identified by qualitative studies.

The present study attempts to look at the improvements in quality of life that have been experienced as a consequence of the CBR programmes by persons with disabilities themselves. This study therefore focuses on the subjective, qualitative indicators. The framework presented in the IASSID Consensus Document has been used as a guideline in analysing and structuring the data.

Emotional well-being and personal development

In this study persons with disabilities have expressed and defined these two quality of life domains in the following way:

Self-esteem. This involves perceptions of emotional well-being, sense of value and personal development.

Empowerment and influence. This involves the perception of influence and control over their personal situation and the level of confidence felt when advocating their own rights and when supporting others.

Social inclusion and interpersonal relations

In this study persons with disabilities have expressed and defined these two quality of life domains in the following way:

Social inclusion. This involves perceptions of social belonging and acceptance, quality and quantity of relationships and communication.

Self-determination and material well-being

In this study persons with disabilities have expressed and defined these two quality of life domains in the following way:

Self-reliance. This involves perceptions of personal independence and the ability to contribute practically and financially towards their own and family maintenance.

Physical well-being

In this study persons with disabilities have expressed and defined this quality of life domain in the following way:

Physical well-being. This involves perceptions of physical health and the level of satisfaction with medical treatment, rehabilitation and support services.

Rights

In this study persons with disabilities have expressed and defined this quality of life domain in the following way:

Confidence and trust in society. This involves perceptions of the level of commitment shown by a society to fulfil its human rights obligations towards persons with disabilities.

Using the Standard Rules to analyse CBR programmes

The UN Standard Rules list a number of areas where states should take action in order to promote equal opportunities and full participation for persons with disabilities. The rules could be successfully used to plan and to monitor government (and CBR programme) input towards human rights for disabled persons, because they cover a comprehensive range of preconditions for change in quality of life concerning persons with disabilities. However, no common methodology has been developed to make quantitative or qualitative assessments of the level of adherence to these rules. To date, three major studies have been undertaken to evaluate how states are adhering to the UN Standard Rules:

  • A study carried out by the UN Special Rapporteur considering the general implement ation of the rules. Questionnaires were directed to governments and DPOs in all UN Member States.
  • A study carried out by WHO in collaboration with the UN Special Rapporteur in 1999 by means of a questionnaire sent to all governments of Member States of the WHO and to 600 NGOs working in the disability field in the Member States of the WHO. The information focuses on issues related to four of the 22 Standard Rules on the Equalization of Opportunities for Persons with Disabilities: Rule 2 on Medical Care, Rule 3 on Rehabilitation, Rule 4 on Support Services and Rule 19 on Personnel Training.
  • A study carried out by the Danish Council of Organizations of Disabled People (DSI) in 1995-1997 by means of establishing an index based on questionnaires to 600 DPOs in 150 countries. DPOs were requested to score the performance of their respective governments in relation to each rule on a scale of 1-6.

All three studies depend on the subjective answers given by authorities and DPOs to a number of questions related to specific rules. These studies could be used as a baseline to monitor the effects of ongoing social and human rights processes. They could also be used to put the findings of this study into a wider context.

As the Standard Rules cover a comprehensive range of preconditions for improved quality of life for disabled persons, they have been used as a reference guide when examining and organizing the reflections made by the interviewees on the usefulness of different CBR programme initiatives. The following clusters of Standard Rules have been specifically mentioned because the programmes studied have particularly addressed these areas:

Awareness-raising. This involves all measures aimed at eliminating stigma, increasing the knowledge of different disabilities and creating an inclusive social environment.

Medical care. This involves early interventions and access to medical treatments.

Rehabilitation and support services. This involves measures to enable persons with disabilities to reach their optimal physical, sensory, intellectual and social levels, and to provide tools, services and assistive devices that compensate for the loss or absence of a functional limitation.

Education. This involves access to basic education and literacy skills.

Income maintenance and social security. This involves employment, vocational skills training and loan facilities.

Government and community commitment. This involves the implementation measures taken by the authorities and the community to fulfil their obligations towards persons with disabilities, such as recognition of their responsibility, adoption of policies and plans, legislation, resource allocation, coordination and training, etc.

Support to DPOs. This involves the empowerment of persons with disabilities to form their own self-help and advocacy groups, the capacity building of these organizations to enable them to engage in development issues in general and disability issues in particular, and the recognition of the importance of these organizations as important stakeholders.

The clusters chosen also reflect most of the components and sectors that have been identified as essential for a CBR programme in the 1997 ESCAP document called "Understanding CBR" referred to above.