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Khasnabis C, Heinicke Motsch K, Achu K, et al., editors. Community-Based Rehabilitation: CBR Guidelines. Geneva: World Health Organization; 2010.

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Community-Based Rehabilitation: CBR Guidelines.

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Introduction

Disability

Evolution of the concept

To understand how disability is currently viewed, it is helpful to look at the way the concept of disability has evolved over time. Historically, disability was largely understood in mythological or religious terms, e.g. people with disabilities were considered to be possessed by devils or spirits; disability was also often seen as a punishment for past wrongdoing. These views are still present today in many traditional societies.

In the nineteenth and twentieth centuries, developments in science and medicine helped to create an understanding that disability has a biological or medical basis, with impairments in body function and structure being associated with different health conditions. This medical model views disability as a problem of the individual and is primarily focused on cure and the provision of medical care by professionals.

Later, in the 1960s and 1970s, the individual and medical view of disability was challenged and a range of social approaches were developed, e.g. the social model of disability. These approaches shifted attention away from the medical aspects of disability and instead focused on the social barriers and discrimination that people with disabilities face. Disability was redefined as a societal problem rather than an individual problem and solutions became focused on removing barriers and social change, not just medical cure.

Central to this change in understanding of disability was the disabled people's movement, which began in the late 1960s in North America and Europe and has since spread throughout the world. The well known slogan “Nothing about us without us” symbolizes the amount of influence the movement has had. Disabled people's organizations are focused on achieving full participation and equalization of opportunities for, by and with persons with disabilities. They played a key role in developing the Convention on the Rights of Persons with Disabilities (1), which promotes a shift towards a human rights model of disability.

BOX 1Iran

Empowering people by enhancing cooperation

The government of the Islamic Republic of Iran piloted a community-based rehabilitation (CBR) programme in two regions in 1992. The programme was successful and was scaled up in 1994 to cover a further six regions within six provinces. By 2006 national coverage was achieved across all 30 provinces. The Social Welfare Organization, under the Ministry of Social Welfare, is responsible for management of the CBR programme across the country, and over 6000 personnel including community workers, middle level CBR staff, physicians, CBR experts and CBR managers are involved in implementing CBR activities.

The mission of the national CBR programme is “to empower people with disabilities, their families and communities regardless of cast, colour, creed, religion, gender, age, type and cause of disability through raising awareness, promoting inclusion, reducing poverty, eliminating stigma, meeting basic needs and facilitating access to health, education and livelihood opportunities”.

The programme is decentralized to the community level with most CBR activities carried out from “CBR town centres”. These centres work in close collaboration with primary health care facilities which include “village health houses” in rural areas and “health posts” in urban areas. Health workers at these facilities receive one to two weeks training which provides them with an orientation to the CBR strategy and national programme and enables them to identify people with disabilities and refer them to the nearest CBR town centre.

The key activities of the CBR programme include:

training family and community members on disability and CBR using the WHO CBR training manual as a guide;

providing educational assistance and facilitating inclusive education through capacity building with teaching staff and students, and improving physical access;

referring people with disabilities to specialist services, e.g. surgical and rehabilitation services, where physiotherapists, speech therapists and occupational therapists are available;

providing assistive devices, e.g. walking sticks, crutches, wheelchairs, hearing aids, glasses;

creating employment opportunities by providing access to training, job coaching and financial support for income-generation activities;

providing support for social activities including for sports and recreation;

providing financial assistance for living, education and home modifications.

More than 229 000 people with disabilities have been supported by the national CBR programme since 1992. Currently, 51% of all rural areas are covered by the programme; the aim is to provide coverage for all rural villages by 2011. CBR councils have been formed to enhance cooperation between all development sectors and to ensure CBR in Iran continues to move forward.

Current definitions

There are many different definitions of disability according to the different perspectives mentioned above. The most recent definitions of disability come from the:

  • International Classification of Functioning, Disability and Health (ICF), which states that disability is an “umbrella term for impairments, activity limitations or participation restrictions” (2), which result from the interaction between the person with a health condition and environmental factors (e.g. the physical environment, attitudes), and personal factors (e.g. age or gender).
  • Convention on the Rights of Persons with Disabilities, which states that disability is an evolving concept and “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (1).

People's experiences of disability are extremely varied. There are different kinds of impairments and people are affected in different ways. Some people have one impairment, others multiple; some are born with an impairment, while others may acquire an impairment during the course of their life. For example, a child born with a congenital condition, such as cerebral palsy, a young soldier who loses his leg to a landmine, a middle-aged woman who develops diabetes and loses her vision, an older person with dementia may all be described as people who have disabilities. The Convention on the Rights of Persons with Disabilities describes people with disabilities as “…those who have long-term physical, mental, intellectual or sensory impairments…” (1).

Global trends

Globally, the most common causes of disability include: chronic diseases (e.g. diabetes, cardiovascular disease and cancer); injuries (e.g. due to road traffic accidents, conflicts, falls and landmines); mental health problems; birth defects; malnutrition; and HIV/AIDS and other communicable diseases (3). It is very difficult to estimate the exact number of people living with disabilities throughout the world, however the number is increasing due to factors such as population growth, increase in chronic health conditions, the ageing of populations, and medical advances that preserve and prolong life (3). Many low and middle-income countries face a double burden, i.e. they need to address both traditional problems, such as malnutrition and infectious diseases, and new problems, such as chronic conditions.

BOX 2

Global statistics about people with disabilities

  • Approximately 10% of the world's population lives with a disability (4).
  • People with disabilities constitute the world's largest minority (5).
  • An estimated 80% of people with disabilities live in developing countries (5).
  • An estimated 15–20% of the world's poorest people are disabled (6).
  • No rehabilitation services are available to people with disabilities in 62 countries (7).
  • Only 5–15% of people with disabilities can access assistive devices in the developing world (8).
  • Children with disabilities are much less likely to attend school than others. For example in Malawi and the Republic of Tanzania, the probability of children never having attended school is doubled if they have disabilities (9).
  • People with disabilities tend to experience higher unemployment and have lower earnings than people without disabilities (10).

Development

Poverty and disability

Poverty has many aspects: it is more than just the lack of money or income. “Poverty erodes or nullifies economic and social rights such as the right to health, adequate housing, food and safe water, and the right to education. The same is true of civil and political rights, such as the right to a fair trial, political participation and security of the person…” (11)

“Wherever we lift one soul from a life of poverty, we are defending human rights. And whenever we fail in this mission, we are failing human rights.”

—Kofi Annan, former United Nations Secretary-General

Poverty is both a cause and consequence of disability (12): poor people are more likely to become disabled, and disabled people are more likely to become poor. While not all people with disabilities are poor, in low-income countries people with disabilities are over-represented among the poorest. Often they are neglected, discriminated against and excluded from mainstream development initiatives, and find it difficult to access health, education, housing and livelihood opportunities. This results in greater poverty or chronic poverty, isolation, and even premature death. The costs of medical treatment, physical rehabilitation and assistive devices also contribute to the poverty cycle of many people with disabilities.

Addressing disability is a concrete step to reducing the risk of poverty in any country. At the same time, addressing poverty reduces disability. So poverty must be eliminated to achieve a better quality of life for people with disabilities, hence one of the main objectives of any community-based rehabilitation (CBR) programme needs to be to reduce poverty by ensuring that health, education and livelihood opportunities are accessible to people with disabilities.

BOX 3

Selam gets a new lease of life

Since the age of eight, Selam had complained of headaches. Her family did not know what to do and sent her several times to the church to receive holy water. The holy water did not work and slowly Selam started losing her vision. One day, Selam went to a local health centre which had an eye department. They felt that her case was too difficult and referred her to the main referral hospital in the capital. The hospital enrolled her on the waiting list for surgery. More than a year went by but Selam's turn did not come. Due to poverty, her family could not afford to take her to a private hospital for surgery. When she was first put on the waiting list, Selam could still see a little, but over time she lost most of her eyesight. Because of her disability and poverty, she could not continue her schooling and as a result Selam became increasingly depressed. She became isolated, stayed at home and no longer socialized with her friends. She became a burden to her family, who did not know what to do with her. Her headaches increased, she started vomiting and losing balance, and was close to dying.

CBR personnel were able to make arrangements for Selam to see a specialist neurosurgeon, who discovered that she had a benign tumor – a meningioma. Selam was operated on and the tumour was removed. The hospital authority and the social fund created by the doctor contributed 75% of the costs of surgery, and the CBR programme contributed the remaining 25%, with the family making contributions for travel, food and lodging. Now Selam is free from the problem, but, due to poverty, the system, and the delay in intervention, she is almost blind. Following mobility training by CBR personnel however, Selam is now quite independent and moves freely in the community. She is also learning Braille so she can go back to school.

Because of CBR intervention, Selam's quality of life changed dramatically and is no longer a burden to her family. All this was made possible by the cooperation from Selam and her family, the linkage with referral centres, and the support from specialists and hospital authorities.

Millennium Development Goals

In September 2000, UN Member States adopted eight Millennium Development Goals (MDGs), which range from eradicating extreme poverty and hunger to providing universal primary education, all by the target date of 2015 (13). These internationally agreed development goals represent the benchmarks set for development at the start of the new century. While the MDGs do not explicitly mention disability, each goal has fundamental links to disability and cannot be fully achieved without taking disability issues into account (14). Therefore in November 2009, the Sixty-fourth UN General Assembly adopted a resolution on Realizing the millennium development goals for persons with disabilities (A/RES/64/131) (15).

BOX 4

Inclusion of disabled people, World Bank

“Unless disabled people are brought into the development mainstream, it will be impossible to cut poverty in half by 2015 or to give every girl and boy the chance to achieve a primary education by the same date – [which is among] the goals agreed to by more than 180 world leaders at the UN Millennium Summit in September 2000”.

— James Wolfensohn, former President of the World Bank. Washington Post, Decembers, 2002.

Disability inclusive development

Inclusive development is that which includes and involves everyone, especially those who are marginalized and often discriminated against (16). People with disabilities and their family members, particularly those living in rural or remote communities or urban slums, often do not benefit from development initiatives and therefore disability inclusive development is essential to ensure that they can participate meaningfully in development processes and policies (17).

Mainstreaming (or including) the rights of people with disabilities in the development agenda is a way to achieve equality for people with disabilities (18). To enable people with disabilities to contribute to creating opportunities, share in the benefits of development, and participate in decision-making, a twin-track approach may be required. A twin-track approach ensures that (i) disability issues are actively considered in mainstream development work, and (ii) more focused or targeted activities for people with disabilities are implemented where necessary (12). The suggested activities for CBR programmes as detailed within these guidelines are based on this approach.

Community-based approaches to development

Development initiatives have often been top–down, initiated by policy-makers at locations far removed from community level, and designed without involvement of the community. It is now recognized that one of the essential elements of development is involvement of the community as individuals, groups or organizations, or by representation, in all stages of the development process including planning, implementation and monitoring (19). A community-based approach helps to ensure that development reaches the poor and marginalized, and facilitates more inclusive, realistic and sustainable initiatives. Many agencies and organizations promote community approaches to development. For example, the World Bank promotes Community Driven Development (CDD) (20) and the World Health Organization promotes Community-based Initiatives (CBI) (21).

Human rights

What are human rights?

Human rights are internationally agreed standards which apply to all human beings (22); everybody is equally entitled to their human rights – e.g. the right to education and the right to adequate food, housing and social security – regardless of nationality, place of residence, sex, national or ethnic origin, colour, religion, or other status (23). These rights are affirmed in the Declaration of Human Rights, adopted by all Member States of the United Nations in 1948 (24), as well as in other international human rights treaties which focus on particular groups and categories of populations, such as persons with disabilities (22).

Convention on the Rights of Persons with Disabilities

On 13 December 2006, the UN General Assembly adopted the Convention on the Rights of Persons with Disabilities (1). The Convention is a result of many years of action for persons with disabilities, builds upon the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) (25) and the World Programme of Action Concerning Disabled Persons (1982) (26), and complements existing human rights frameworks. The Convention was developed by a committee with representatives from governments, national human rights institutes, nongovernmental organizations and disabled people's organizations. Its purpose is “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (1 [Article 1]).

BOX 5

A new era in rights for the disabled

“The UN Convention on the Rights of Persons with Disabilities represents the dawn of a new era for around 650 million people worldwide living with disabilities.”

Kofi Annan, former United Nations Secretary-General

The Convention covers a number of key areas, such as accessibility, personal mobility, education, health, rehabilitation and employment, and outlines measures States Parties must undertake to ensure the rights of persons with disabilities are realized. The Convention has not created any new rights for persons with disabilities – they have the same human rights as any other person within the community – but instead makes the existing rights inclusive of, and accessible to, persons with disabilities.

Human rights-based approach to development

Human rights and development are closely linked – human rights are a fundamental part of development, and development is a way to realize these human rights (27). As a result, many agencies and organizations commonly use a human rights-based approach in their development programmes. While there is no universal recipe for a human-rights based approach to development, the United Nations has identified a number of important characteristics (28) for such an approach:

  • fulfils human rights – the main objective of development programmes and policies should be to fulfil human rights;
  • follows certain principles and standards – the principles and standards of international human rights treaties should guide all development cooperation and programming in all sectors (e.g. health and education) and in all phases of the programming process (e.g. situation analysis, planning and design, implementation and monitoring, evaluation) (see Box 6 for the general principles contained in the Convention on the Rights of Persons with Disabilities);
  • concerns rights holders and duty bearers – rights holders are people who have rights, e.g. children are rights holders as they have the right to education; duty bearers are the people or organizations who are responsible for ensuring that rights holders can enjoy their rights, e.g. the ministry of education is a duty bearer as it must ensure children can access education, and parents are duty bearers as they must support their children to attend school.

BOX 6

Convention on the Rights of Persons with Disabilities, Article 3: General principles (1)

The principles of the present Convention shall be:

  1. Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons
  2. Non-discrimination
  3. Full and effective participation and inclusion in society
  4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  5. Equality of opportunity
  6. Accessibility
  7. Equality between men and women
  8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

Community-based rehabilitation (CBR)

The early years

The declaration of Alma-Ata in 1978 (29) was the first international declaration advocating primary health care as the main strategy for achieving the World Health Organization's (WHO) goal of “health for all” (30). Primary health care is aimed at ensuring that everyone, whether rich or poor, is able to access the services and conditions necessary for realizing his/her highest level of health.

Following the Alma-Ata declaration, WHO introduced CBR. In the beginning CBR was primarily a service delivery method making optimum use of primary health care and community resources, and was aimed at bringing primary health care and rehabilitation services closer to people with disabilities, especially in low-income countries. Ministries of health in many countries (e.g. Islamic Republic of Iran, Mongolia, South Africa, Viet Nam) started CBR programmes using their primary health care personnel. Early programmes were mainly focused on physiotherapy, assistive devices, and medical or surgical interventions. Some also introduced education activities and livelihood opportunities through skills-training or income-generating programmes.

In 1989, WHO published the manual Training in the community for people with disabilities (31) to provide guidance and support for CBR programmes and stakeholders, including people with disabilities, family members, school teachers, local supervisors and community rehabilitation committee members. The manual has been translated into more than 50 languages and still remains an important CBR document used in many low-income countries. In addition, Disabled village children: a guide for community health workers, rehabilitation workers and families made a significant contribution in developing CBR programmes, especially in low-income countries (32).

During the 1990s, along with the growth in number of CBR programmes, there were changes in the way CBR was conceptualized. Other UN agencies, such as the International Labour Organization (ILO), United Nations Educational, Scientific and Cultural Organization (UNESCO), United Nations Development Programme (UNDP), and United Nations Children's Fund (UNICEF) became involved, recognizing the need for a multisectoral approach. In 1994, the first CBR Joint Position Paper was published by ILO, UNESCO and WHO.

Twenty-five year review of CBR

In May 2003, WHO in partnership with other UN organizations, governments and international nongovernmental organizations including professional organizations and disabled people's organizations, held an international consultation in Helsinki, Finland, to review CBR (33). The report that followed highlighted the need for CBR programmes to focus on:

  • reducing poverty, given that poverty is a key determinant and outcome of disability;
  • promoting community involvement and ownership;
  • developing and strengthening of multisectoral collaboration;
  • involving disabled people's organizations in their programmes;
  • scaling up their programmes;
  • promoting evidenced-based practice.

CBR Joint Position Paper

In 2004, the ILO, UNESCO and WHO updated the first CBR Joint Position Paper to accommodate the Helsinki recommendations. The updated paper reflects the evolution of the CBR approach from services delivery to community development. It redefines CBR as a strategy within general community development for the rehabilitation, poverty reduction, equalization of opportunities and social inclusion of all people with disabilities” and promotes the implementation of CBR programmes “…through the combined efforts of people with disabilities themselves, their families, organizations and communities, and the relevant governmental and non-governmental health, education, vocational, social and other services” (34).

The Joint Position Paper recognizes that people with disabilities should have access to all services which are available to people in the community, such as community health services, and child health, social welfare and education programmes. It also emphasizes human rights and calls for action against poverty, and for government support, and development of national policies.

CBR today

CBR matrix

In light of the evolution of CBR into a broader multisectoral development strategy, a matrix was developed in 2004 to provide a common framework for CBR programmes (Fig. 1). The matrix consists of five key components – the health, education, livelihood, social and empowerment components. Within each component there are five elements. The first four components relate to key development sectors, reflecting the multisectoral focus of CBR. The final component relates to the empowerment of people with disabilities, their families and communities, which is fundamental for ensuring access to each development sector and improving the quality of life and enjoyment of human rights for people with disabilities.

Fig 1. CBR matrix.

Fig 1

CBR matrix.

CBR programmes are not expected to implement every component and element of the CBR matrix. Instead the matrix has been designed to allow programmes to select options which best meet their local needs, priorities and resources. In addition to implementing specific activities for people with disabilities, CBR programmes will need to develop partnerships and alliances with other sectors not covered by CBR programmes to ensure that people with disabilities and their family members are able to access the benefits of these sectors. The Management chapter provides further information about the CBR matrix.

CBR principles

The CBR principles are based on the principles of the Convention on the Rights of Persons with Disabilities (1) outlined below. In addition, two further principles have been proposed which are: empowerment including self-advocacy (see Empowerment component), and sustainability (see Management chapter). These principles should be used to guide all aspects of CBR work.

Moving forward

The CBR guidelines provide a way forward for CBR programmes to demonstrate that CBR is a practical strategy for the implementation of the Convention on the Rights of Persons with Disabilities (1) and to support community-based inclusive development.

CBR is a multisectoral, bottom-up strategy which can ensure that the Convention makes a difference at the community level. While the Convention provides the philosophy and policy, CBR is a practical strategy for implementation. CBR activities are designed to meet the basic needs of people with disabilities, reduce poverty, and enable access to health, education, livelihood and social opportunities – all these activities fulfil the aims of the Convention.

CBR programmes provide a link between people with disabilities and development initiatives. The CBR guidelines target the key sectors of development that need to become inclusive so that people with disabilities and their families become empowered, contributing to an inclusive society or ‘society for all’. As community involvement is an essential element of development, the guidelines strongly emphasize the need for CBR programmes to move towards involvement of the community.

BOX 7

CBR programmes make a difference

CBR can help to ensure that the benefits of the Convention reach people with disabilities at the local level through:

  • familiarizing people with the Convention – actively promoting the convention and helping people to understand its meaning;
  • collaborating with stakeholders – working with nongovernmental organizations, including disabled people's organizations and local governments, to implement the Convention;
  • advocacy – engaging in advocacy activities which aim to develop or strengthen anti-discrimination laws and inclusive national and local policies relating to sectors such as health, education and employment;
  • coordinating between local and national levels – promoting and supporting dialogue between local and national levels; strengthening local groups or disabled people's organizations so that they can play a significant role at local and national levels;
  • helping to draw up and monitor local action plans – contributing to the development of local action plans that have concrete actions and the necessary resources for incorporating disability issues into local public policies and achieving intersectoral collaboration;
  • programme activities – implementing activities which contribute to making health, education, livelihood and social services accessible to all persons with disabilities including those who are poor and live in rural areas.

Research and evidence

As reflected in these guidelines, CBR is a multisectoral strategy for the inclusion of people with disabilities and their families in development initiatives. This poses challenges for researchers, and as a result only limited evidence is available about the efficiency and effectiveness of CBR. However, a body of evidence has accumulated over time, from formal research studies, diverse experiences of disability and CBR, evaluations of CBR programmes, and the use of best practices drawn from similar approaches in the field of international development.

CBR research relating to low-income countries has increased dramatically in recent years (35), both in quality and quantity. Based on published reviews of CBR research and other literature, rather than individual studies, the following can be noted:

  • CBR-type programmes have been identified as effective (36,37) and even highly effective (38). Outcomes include increased independence, enhanced mobility, and greater communication skills of people with disabilities (39). There are also anecdotal indications of the cost–effectiveness of CBR (36,37,38).
  • Systematic reviews of research on community-based approaches in brain injury rehabilitation in high-income countries indicate that such approaches are at least as effective or more effective than traditional approaches, and have greater psychosocial outcomes and a higher degree of acceptance by people with disabilities and their families (40,41,42,43).
  • Livelihood interventions associated with CBR have resulted in increased income for people with disabilities and their families (39) and are linked to increased self-esteem and greater social inclusion (44).
  • In educational settings, CBR has been found to assist in the adjustment and integration of children and adults with disabilities (38,39,36).
  • The CBR approach has been found to constructively facilitate the training of community workers in the delivery of services (38).
  • As similar research in high-income countries has shown, CBR activities have positive social outcomes, to influence community attitudes, and to positively enhance social inclusion and adjustment of people with disabilities (38,39,36).

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