Figure 1. Disability and prevention
The rights of people with disabilities
During the past two decades the concepts of disability and
rehabilitation have gradually changed. The medical model of disability
is being replaced with a social model; rehabilitation is viewed
as a process in which people with disabilities participate in
the decisions that are made about what services they need to reduce
limitations in their activities. The limited participation in
school, work and social activities experienced by disabled people
is not viewed as only a result of their impairments, but also
as a result of societal barriers to their participation. The rights
of people with disabilities to have the same opportunities as
others in their communities and societies are gradually being
recognized.
The Standard Rules on the Equalization of Opportunities for Persons with Disabilities , a document adopted by the United Nations General Assembly in 1993, gives important directions on the rights of persons with disabilities. It states that:
"The principle of equal rights implies that the needs of each and every individual are of equal importance, that those needs must be made the basis for the planning of societies, and that all resources must be employed in such a way as to ensure that every individual has equal opportunity for participation."
There are 22 UN Standard Rules, all dealing with different aspects of the rights of persons with disabilities to have equal opportunities. In health related work, some rules are of particular interest. Three of these are:
Rule 2. Medical care:
States should ensure the provision of effective medical care to persons with disabilities.
Rule 3. Rehabilitation:
States should ensure the provision of rehabilitation services to persons with disabilities in order for them to reach and sustain their optimum level of independence and functioning.
Rule 4. Support services:
States should ensure the development and supply of support services, including assistive devices for persons with disabilities, to assist them to increase their level of independence in their daily living and to exercize their rights.
As can be understood from the two latter rules, rehabilitation and related support services have a wider purpose than ﾒjustﾓ improving functions of persons with disabilities; the services are a means to provide persons with disabilities with the same opportunities as all other persons ﾐ the same opportunities to go to school, to work and to participate in the activities of their families, communities and societies just as other citizens do.
In order to provide appropriate health and rehabilitation services to persons with disabilities, properly trained personnel must be available. This is also noted in the UN Standard Rules:
Rule 19. Personnel training:
States are responsible for ensuring the adequate training of personnel, at all levels, involved in the planning and provision of programmes and services concerning persons with disabilities.
Furthermore, the UN Standard Rules clearly indicate that it is the responsibility of states to ensure policy-making (rule 14) and legislation (rule 15) in the disability field. The document, as such, offers an instrument for this work, and it gives important guidance to governmental service providers ﾐ as well as to local and international NGOs ﾐ on the planning and implementation of disability and rehabilitation programmes at country level. In addition, the Standard Rules can become international customary rules when they are applied by a greater number of states.
The service providers
In the health sector, there are three main programmes responsible
for providing rehabilitation services. They are:
specialized rehabilitation services;
primary health care services; and
community-based rehabilitation (CBR) programmes.
This paper will take a closer look at these three programmes, their particular features, how they may contribute to national service provision, and how collaboration between the programmes may improve rehabilitation.
Specialized rehabilitation services
To ensure the rights of disabled people, specialized rehabilitation
services must be available. Rehabilitation services should be
provided by specially trained personnel. In the health sector,
the types of personnel include specialized medical doctors; physical,
occupational and speech therapists; and staff in prosthetics and
orthotics services. Other personnel who may be members of a rehabilitation
team include psychologists and social workers.
In all countries, some specialized rehabilitation services are established at the national level. The distribution of services usually follows a top-down approach in which they are expanded by placing them at provincial level, then district, and finally sub-district level. Industrialized countries have rehabilitation services distributed to sub-district level so that they are available to all communities. Few developing countries, however, have yet been able to provide specialized rehabilitation services at district level.
The type of services provided at each level varies a great deal among countries. In most countries the ministry for health provides therapy services at national and provincial level hospitals. However, the therapy services in the hospitals often focus on acute care, i.e. on persons who have sustained injuries, had surgery or have had a recent onset of a disabling condition, such as a stroke. Long-term rehabilitation services may be provided in separate rehabilitation centres or out-patient services.
The ministry for health may also provide services for prosthetics and orthotics (P&O), in some countries at national level only, but frequently also at provincial level. In some countries, the ministry for social services is in charge of prosthetic and orthotic centres. Social services may provide both P&O services and vocational rehabilitation, perhaps in the same facility. Since most people who require a prosthesis or an orthosis may require medical or surgical interventions, followed by physical rehabilitation, the collaboration between the social and health sectors is essential.
Strengthening and further decentralizing the specialized rehabilitation services is a concern in most developing countries. It would be desirable to have the number of facilities needed to allow all people ﾐ also the ones living in rural and remote areas ﾐ to have easy access to the services. Some countries indicate that such extensive services are too costly. However, the cost of having people in society who could be productive citizens and are not, must also be considered. If the authorities, and in particular the health sector, take a broad perspective of disability, they will acknowledge that rehabilitation is necessary to achieve the goal of equalization of opportunities for people with disabilities.
Primary health care
Primary health care (PHC) refers to the basic health care
services that should be available in or near communities so that
people do not have to travel unreasonable distances to reach the
health centres. According to the 1978 Declaration of Alma-Ata,
primary health care should address the main health problems in
the community, providing promotive, preventive, curative and rehabilitative
services accordingly. These four aspects of PHC relate to three
levels of prevention: primary, secondary and tertiary
prevention. Figure 1 (below) shows the relationship between the
three levels of prevention as well as the components of disability:
Primary prevention (promotive and preventive services) takes place before the occurrence of disease or injury. It includes health education, immunization and monitoring of health status in children or the elderly.
Secondary prevention (curative services) includes early detection and treatment of diseases, conditions and injuries that can cause impairments of body structure and function, and thereby activity limitations.
Tertiary prevention is concerned with the reduction of impairments and activity limitations, i.e. rehabilitation measures. As indicated in the figure, tertiary prevention may also address factors that may cause restrictions in social participation (for example societal beliefs, attitudes and environmental factors). Much of this work, however, would go beyond the duties of primary health care personnel.
It should be noted that the term disability (as now
used in the WHO ICIDH-2 ) refers to impairments in body structure
or function, limitations in the ability to perform personal activities,
and restricted participation in social activities (see figure).
The weakest component of PHC is undoubtedly the tertiary prevention, i.e. the rehabilitative services. In almost all countries, the PHC personnel do not view tertiary prevention as part of their responsibilities, but as the full responsibility of rehabilitation personnel. Possible reasons for this include inadequate training, work schedules fully occupied with only primary and secondary prevention, and infrequent visits to the PHC centres by people with disabilities (which may naturally results from disabled people's experiences and expectations that no useful services will be offered to help them).
Given that rehabilitative services should be part of PHC, it must also be noted that PHC is not responsible for providing a full complement of rehabilitation services. The responsibilities of PHC personnel should focus on giving basic information for maintaining the highest level of function possible.
The amount of information that PHC personnel can give to people with disabilities depends somewhat on the availability of specialized rehabilitation services. The PHC personnel may have more information to give if such services are accessible since, in that case, the rehabilitation specialists may be able to provide guidelines for exercises and activities that the PHC personnel can reinforce. In addition to this, primary health care staff may make sure that persons are referred to the specialized services when this is needed and that they are followed up on their return to the community.
In all countries, the basic responsibilities of PHC personnel in tertiary care should for example include:
・identifying impairments, for example by screening for delayed development when children come to the health services for immunization and health checks;
・maintaining a list of rehabilitation services and other resources available at various levels, and direct people with disabilities as appropriate;
・providing information about how to prevent further impairment or limitations in activities;
・demonstrating and explaining positioning and passive movements to prevent deformities for someone who has paralysed muscles;
・demonstrating and explaining simple active exercises that a person can perform to strengthen weak muscles;
・demonstrating and explaining the proper way to use walking aids, such as canes or crutches;
・demonstrating different methods of communication with people who cannot hear or cannot speak; and
・providing appropriate medical care that prevents impairments from becoming more severe.
To sum up, this means that, in addition to providing basic health care services (which could be seen as the normal duties of primary health care), PHC personnel should identify conditions or diseases that can cause disabilities, advice on methods to limit the onset or progression of disabilities, and refer to appropriate rehabilitation services when needed. To ensure that this can be done, it is necessary to transfer relevant knowledge and skills to personnel who work in PHC. (A list of DAR publications, including those addressed to PHC nurses in charge of training of community workers, is find in Annex I: ﾒWHO Efforts for Strengthening Health Sector Support for Disabled Peopleﾓ.)
Community-based rehabilitation
More than two decades have passed since the concept of community-based
rehabilitation (CBR) was first presented. Initially, CBR focused
on methods for provision of basic physical rehabilitation in the
community to persons with disabilities. With time, however, the
concept has grown to a complete strategy for improving - in a
much wider sense - the lives of disabled people; today CBR not
only deals with the health related aspect of disability but, in
line with the UN Standard Rules, it promotes all actions that
can provide persons with disabilities with equal opportunities.
Obviously, this cannot be achieved by the health sector alone,
but requires support also from the sectors of education, labour,
social services and others, which means that the CBR strategy
is multi-sectoral (see figure 2). All sectors should support
CBR by sharing information with the community, collaborating with
each other, and strengthening the special services they provide
to people with disabilities. In addition, to achieve the aims
of CBR, the involvement of disabled peopleﾕs organizations (DPOs)
in the planning and implementation of CBR programmes is imperative,
as is collaboration with local and international non-governmental
organizations (NGOs) and the business community.
Although the support given to the CBR programme from the different sectors varies greatly among countries, the following examples may give an idea of possible contributions:
・The responsibilities of the social sector may include disability pensions, support for special equipment for disabled people, housing and vocational training.
・The health sector may provide support to CBR through its regular primary health care and specialized rehabilitation services (see these sections above).
・The education sector can make an important contribution to CBR by changing the regular schools to make them inclusive schools.
・The labour sector may focus on inclusive job training and encouraging people with disabilities to seek work in the regular job market.
・DPOs may raise awareness and advise NGOs and government services regarding the specific needs of disabled people and the most appropriate ways to address those needs. People with disabilities may provide advice and support to each other and to parents of disabled children.
・Local NGOs include the Red Cross or Red Crescent, women's and youth groups, and organizations or groups with special interests. Some of these may provide services to disabled people, while others can make special efforts to include people with disabilities as members and in their activities.
・International NGOs can make a significant contribution to the development of CBR, for example by supporting the programme implementation and the training of CBR managers and CBR workers, and by helping to strengthen the services within the various sectors that contribute to CBR.
・The business community can support CBR by providing on-the-job training and hiring people with disabilities. The media, which is an important resource within the business community, can provide the public with information about disability issues.
The CBR structure
In contrast to rehabilitation activities performed in the community by staff from specialized rehabilitation centres (i.e. out-reach services), the CBR strategy is truly community-based; it belongs to the community and it is often implemented through the leadership of a community committee headed by the chief of the village or the mayor of the town. The committee may act as coordinator of the many sectors that collaborate (see above).
Though the community is the owner of the CBR programme, and though CBR is a bottom-up approach, national policies and the involvement of national and local governments are essential elements of the programme. One ministry usually initiates the programme and then provides the organizational framework. At national level, the organizing ministry appoints a manager for the national CBR programme. Some countries may have coordinators, and perhaps committees, at all administrative levels. Experience has shown that the district level is the most important point for coordination of support to the community. Therefore, it is particularly important to have district managers, and perhaps district committees, responsible for CBR. The district level programme managers supervise the training and the activities of workers at community level, they monitor the programme activities and coordinate the community committees within the district.
Community workers, who may be employed within the sector that provides the framework for CBR (for example the ministries for health or social welfare) or who in some cases may be volunteers, are a key component of the programme. They should provide advice to disabled people and their families about basic functional rehabilitation activities (similar to the advice given by PHC staff, as discussed above). They may also give advice on, for example, the construction of simple assistive devices to improve independence in daily activities, the use of sign language and the use of a walking stick by a person who is blind. The community worker also acts as an advocate for people with disabilities by making contacts with schools, work places and organizations to promote the inclusion of community members with disabilities. As in the case of PHC personnel, CBR workers need training to manage this work.
Conclusion
Specialized rehabilitation services are not working alone
in the rehabilitation sector; also primary health care services
and CBR programmes can contribute to making sure that persons
with disabilities receive the services they are entitled to.
While PHC is an integrated part of national health services, CBR is multi-sectoral and may in fact belong to any sector and be initiated by any ministry. It is clear, however, that CBR must have strong links with the health services.
While specialized rehabilitation services have a top-down character and CBR programmes are implemented in a bottom-up approach, PHC can be their natural ﾒconnecting pointﾓ and may provide the framework that is needed to link community work with specialized services at national level.
It is important to promote collaboration between specialized rehabilitation services, primary health care and CBR programmes since this may improve the total outcome of rehabilitation programmes. Training must be provided to PHC staff for their work in tertiary prevention, and to CBR workers for the activities they are expected to perform in the community. Rehabilitation specialists need to be involved in the development of curricula for such courses and possibly in the training itself. In addition, in the training of rehabilitation specialists, it is important to provide more information about PHC, CBR and the rights of people with disabilities.
The aim of strengthening health and rehabilitation services for people with disabilities is more likely to be met if all the three approaches are strengthened and encouraged to work in a coordinated manner. For example, a ministry for health would not serve disabled people well by strengthening rehabilitative services in PHC as a substitute for providing specialized rehabilitation services. The two approaches should be strengthened together in order to reinforce each other and provide better, more comprehensive services for people with disabilities. If PHC and the referral services function well and collaborate with each other the skilled advice and rehabilitation training given by the specialized services will be supported by the PHC personnel in the homes and communities of people with disabilities. This combined effort also results in a meaningful contribution from the health sector for community-based rehabilitation.
Obviously, it is essential to clarify the relationship between specialized rehabilitation services, PHC and CBR and to coordinate their respective work. Coordination ﾐ and decentralization ﾐ does not always grow spontaneously, but will most often require that national policies and strategies be developed. A national plan for the strengthening of rehabilitation services may describe the mechanisms for coordination and may be presented by the health sector to local and international NGOs who may assist in implementing the plan according to the government framework.
NOTE
[1]United Nations 1994. The document can be ordered free of charge
from: Disabled Persons Unit, Department for Policy Coordination
and Sustainable Development, United Nations, Room DC2-1302, New
York, NY 10017, USA, Fax: +1 212 963-3062. It can also be found
on: http://www.un.org/esa/socdev/enable/dissre00.htm
[2]ICIDH-2: International Classification of Functioning and Disability.
Beta-2 draft, Full Version. Geneva, World Health Organization
(WHO), 1999. The document can also be found on: http://www.who.int/icidh
[3]Replaces the formally used term "Disability".
[4]Replaces the formally used term "Handicap".
Annex I
WHO Efforts for Strengthening Health Sector Support for Disabled People
During the past two decades the World Health Organization has promoted the inclusion of disability issues in the health sector. The work has focused on the three topics discussed in this paper: strengthening of the specialized rehabilitation services, strengthening of tertiary prevention in PHC, and health sector support for CBR.
WHO has promoted these three approaches through international meetings involving WHO Regional Offices, Member States, other UN agencies, DPOs, international NGOs and donor agencies. In regional rehabilitation meetings the emphasis has been on strengthening PHC and the specialized services as a support to CBR. In multisectoral meetings with other UN agencies, particularly UNESCO and ILO, the focus has been on CBR, noting that each sector must be strengthened in order to ensure the inclusion of disabled people in health, education and work.
WHO has also produced documents that support the strengthening of each of the three approaches. Some of these are the result of international meetings. Others were prepared in response to needs expressed at meetings or through repeated requests from different countries and organizations.
WHO Documents
Documents for programme managers
To promote the strengthening of rehabilitation services within the health sector, WHO held international conferences that produced consensus and guidelines for training personnel who can contribute to the expansion of rehabilitation referral services. This was done for prosthetists/orthotists and for mid-level rehabilitation workers and resulted in the following documents:
・Guidelines for Training Personnel in Developing Countries for Prosthetic and Orthotic Services [WHO/RHB/90.1 (E. & F.)]
・The Education of Mid-Level Rehabilitation Workers: Recommendations from Country Experiences [WHO/RHB/92.1 (E. & F.)]
In an effort to better prepare primary health care personnel to work with people with disabilities, the WHO programme for rehabilitation collaborated with the nursing programme and held an international conference to develop a model curriculum on disability for the basic training of nurses. This produced:
ｷ Disability Prevention and Rehabilitation: A Guide for Strengthening the Basic Nursing Curriculum [WHO/RHB/96.1 (E.)]
A similar process has been initiated for the training of doctors.
In close collaboration with representatives from major international organizations working in the field of prosthetics and orthotics services, a document was prepared to serve as a background paper for discussions among staff concerned with this work in developing countries:
・Prosthetics and Orthotics Services in Developing Countries ﾐ A Discussion Document [WHO/DAR/99.1 (E.)]
A guide was prepared for health sector management of rehabilitation referral services in support of CBR:
・Community-Based Rehabilitation and the Health Care Referral Services: A Guide for Programme Managers [WHO/RHB/94.1 (E. & F.)]
Documents providing support to rehabilitation services in PHC
WHO has supported the strengthening of tertiary prevention within PHC by collaborating with other WHO programmes to promote a continuum of care from primary through tertiary prevention. To promote discussion within countries regarding the strengthening of tertiary prevention, WHO prepared the manual:
・Disability Prevention and Rehabilitation in Primary Health Care: A Guide for District Health and Rehabilitation Managers [WHO/RHB/95.1 (E. & F.)]
In addition, WHO, in collaboration with international organizations for physical and occupational therapy and organizations concerned with specific conditions that can cause disabilities, prepared several manuals that can assist PHC personnel and mid-level rehabilitation workers to assess and provide guidelines for people with some types of disabilities. These include:
・Promoting the Development of Young Children with Cerebral Palsy: A Guide for Mid-Level Rehabilitation Workers [WHO/RHB/93.1 (E. & F.)]
・Promoting the Development of Infants & Young Children with Spina Bifida and Hydrocephalus: A Guide for Mid-level Rehabilitation Workers [WHO/RHB/96.5 (E.)]
・Promoting Independence Following a Spinal Cord Injury: A Manual for Mid-level Rehabilitation Workers [WHO/RHB/96.4 (E.)]
Similar documents are currently being prepared for persons with amputations and traumatic brain injury.
WHO worked with therapists from the Ministry of Health in Zimbabwe who produced a manual to guide families with children who cannot communicate:
・Let's Communicate: A Handbook for People Working with Children with Communication Difficulties [WHO/RHB/97.1 (E.)]
WHO also worked with an international NGO, AIFO, to produce a manual that can be used by doctors and therapists in their work with people who have had strokes:
・Promoting Independence Following a Stroke: A Guide for Therapists and Professionals Working in Primary Health Care [WHO/DAR/99.2 (E.)].
The programme for rehabilitation worked with the WHO programme for polio eradication to prepare a manual that could be used by general health workers to guide families with children who get polio despite the eradication efforts:
・Guidelines for the Prevention of Deformities in Polio [WHO/EPI/POLIO/RHB/90.1 (rev.95) (E. & F.)]
Documents providing support to community-based rehabilitation
WHO took a leadership role in the development of the community-based rehabilitation (CBR) shortly after the Alma Ata Declaration. WHO published the manual:
・Training in the Community for People with Disabilities (rev. 1989)
The manual has been translated into at least 30 languages and has served as a guide for CBR programmes in many countries.
In 1994 WHO joined with ILO and UNESCO to support CBR by issuing:
・Community-Based Rehabilitation for and with People with Disabilities; a Joint Position Paper [1994, currently being reviewed (E., F., S. & A.)]
WHO supported the development of methodologies for monitoring and assessing CBR programmes. In collaboration with NGOs that support CBR, WHO produced the following documents:
・Guidelines for Conducting, Monitoring and Self-Assessment of Community-Based Rehabilitation Programmes: Using Evaluation Information to Improve Programmes [WHO/RHB/96.3 (E.)]
・Cost Analysis for Management of Rehabilitation Programmes [WHO/RHB/97.2 (E.)]
WHO has also worked with NGOs, donor agencies and countries to assess the potential of CBR programmes to promote the equalization of people with disabilities in vulnerable groups, i.e., refugees and people living in slums:
・Equal Opportunities for All: A Community-Based Rehabilitation Project for Refugees [Joint NAD/UNHCR/WHO/DAR.9 (E.)]
・Consultation Report on Equal Opportunities for All: A Community Rehabilitation Project for Slums [WHO/MNH/PSA/RHB/96.2 (E.)]
