25 Years of Community-Based Rehabilitation

6/19/2021 25 YEARS OF COMMUNITY-BASED REHABILITATION
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YEARS OF COMMUNITY-BASED REHABILITATION
GUEST EDITORIAL
25 YEARS OF COMMUNITY-BASED
REHABILITATION
Einar Helander*
ABSTRACT
Community-based rehabilitation (CBR) started to be evolved in 1974, 25 years
ago. Since then CBR has developed from a concept to a policy and to a
programme. In this article, a short personal account will be given of how this
occurred, and some of the lessons learnt along the road.
THE CHALLENGE OF THE CONVENTIONAL SYSTEM FOR

REHABILITATION
In the late 1960s it was becoming increasingly obvious that disability was
common everywhere and that the number of people with disabilities in the
developing countries was much higher than presumed. Experts began to
express concern about the adequacy of the "conventional" type of services,

provided in these countries (1). These services, the types of personnel and the
models for conducting the work had to very large extent been inspired by
professionals from the industrialised West.
In 1974, the following summary of the situation was given in a World

Health Organisation (WHO) document (2):
"...rehabilitation services are practically non-existent or grossly

inadequate in developing countries;...
"...there is an apparent lack of national planning and co-ordination of

services (medical, educational, vocational, social, etc.) in most
https://www.dinf.ne.jp/doc/english/asia/resource/apdrj/z13jo0500/z13jo0503.html 1/15
countries...
"...medical rehabilitation services have usually concentrated on

institutional care, with a low turnover of patients at a high unit cost;
"...when advanced rehabilitation services and technology have been

introduced in developing countries, the result has often been
discouraging or a complete failure."
A UNESCO document states: "The stark reality is that the great majority of
children and young people with special education needs do not receive an
appropriate education, if they are offered any education at al." (3).
The conclusion already by the mid-1970s was that the conventional system
for rehabilitation in the developing regions needed a number of substantial

changes:
of technology, so it would be better suited to the cultural, social,

educational and health realities of the developing regions,
of the service delivery system so that eventually all people with
disabilities could be provided at least the essential services and
opportunities. Obviously, this would not be possible without a radical
change in the training of personnel. It was equally clear that untapped
resources would have to be mobilised, most important were: the
disabled person, the family and the community.
of the management system, including policy-making, planning, ways of
implementing, co-ordination of all sectors, technical supervision, and by
an adequate and credible evaluation of its quality and costs. Community
involvement was seen as a necessary component. This would be
facilitated, if there were a process encouraging self-development. This
would include local micro-management with decentralisation of the
political decision-making and control of resources. Persons with
disabilities and their families should be involved and empowered as part
of this process.
POLITICS AT THE GLOBAL LEVEL.

The next question was political. Would this fundamental change of vision be
politically possible? Would international bodies, such as the WHO, support

changes that obviously would be resisted by large groups of professionals and
organisations with stakes in the conventional system? A WHO Expert Panel

Report had just a few years before recommended that the fundamental
problems in developing countries would be solved by an extension of the

"conventional" system. (4). This extension included in their opinion the
training of huge numbers of (some 30, in the ideal case, according to them)
different professionals. The implementation would, of course, have to wait for
the time when national financing and trained personnel became available.
Knowing well that there were insurmountable problems associated with their
"solution", these experts had in reality concluded that rehabilitation in the

developing countries in our times would not be feasible. The lack of "common
sense" was obvious.
In 1973 the WHO elected a new Director-General, Dr. Halfdan Mahler, and
with him started a period of 15 years of innovations, creativity and new
policies. When I came to work for WHO in 1974, its headquarters was a
beehive of ideas. In 1973 the leading Director, Dr. Kenneth Newell had with Dr.
Esther Amundsen from Denmark written a forward-looking document about
"Primary health care", in which they called for a total change of direction and
priorities for health. Newell later on edited a book "Health by the people",
which had a number of examples of how a system of already existing primary

health care worked (5). "Appropriate technology" was seen as a very
important part of the innovations (6). Dr. Mahler and Dr. J. Cohen at the
headquarters of WHO promoted and directed the new ideas until a total
change of WHO policy had led to the Alma-Ata Conference and Declaration in
1978 on Primary Health Care (PHC) and "Health for All by the Year 2000" (7).
All countries in the world approved these radical changes of policies and
pledged to implement them.
The "revolution" of health care implied moving away from the established
professional-focused systems to people-oriented ones. Until then, some 90 per
cent of the scarce health care budgets of most developing countries had been
used for a few expensive hospitals in the main cities. With the new WHO
policy, health care was to be " by the people", "for the people" and "of the
people". All citizens should have at least the basic services. These should be
available in their communities. Rehabilitation was declared as the fourth
component of the primary health programme, with promotion, prevention and
curative services. This proposal came from the Polish Member of the Executive
Council of WHO and was approved without dissent. With this background, the
World Health Assembly has at several instances approved the concept and
programme for community bases rehabilitation (CBR) and called for its
Member States to implement it. All concerned UN agencies have later on

joined the call for CBR to be implemented.
This policy change was obviously in tune with other world-wide ideological
transformations. These were times with many examples of political turmoil
leading to terror and tragedies in some countries; in others to student, worker,
peasant or military revolts, occupations of public buildings and demonstrations

against authorities, uproars and falls of some dictators. Authority was being
challenged everywhere, and not-so-new principles of participation, social
justice, equality and solidarity were again being part of the vision.
However, some intergovernmental organisations for the time being walked
somewhat carefully, when using words associated with "democracy" and

"human rights". Their leaders preferred to use expressions such as the "New
World Economic Order" and "equalisation of opportunities". At those times, it
was widely believed that the best way out of misery and poverty was money.
Governments, intergovernmental organisations and non-governmental
organisations (NGOs) had in the 1950s started to provide funds to the

developing countries in the belief that this would lead to great changes. In the
beginning, there was not much questioning about the results. The money
provided would in the end "somehow trickle down to the poor". Now we know
that the policies of the past have been seriously flawed; the way out of
poverty for the billions is yet to be found.
The conclusion of this was that the times were right for a change of the
policies and programmes concerning disability and rehabilitation. A first step

was to strengthen programmes for prevention of disabilities. Today large
resources are going into such programmes. Next followed the efforts of
meeting the essential needs of persons with disabilities in the communities
where they lived. The new policy and programme was baptised as
"Community-based Rehabilitation" (CBR); these words reflected the main idea
about change. The "battle for CBR" was now to follow.
DEVELOPING CBR TECHNOLOGY

In 1978 started the phase of formulating the CBR technology: "What to do"?
Western professionals had been severely criticised for copying and transferring
rehabilitation technology from the industrialised countries. Some knew well
that a great deal of Western rehabilitation was based on " methods and
techniques not fully researched and substantiated" (8). In addition, when
these techniques were transferred, not much effort had gone into adapting
them to the culture, social and economic situation of the recipient countries.
There was little or no research on the self-perceived needs of the group of

"beneficiaries".
The "appropriate CBR technology" started with the reverse approach. The
concept is built on the observation that family members are the best resource
to handle the daily training and care of a disabled person. Most rehabilitation
training is simple and repetitive. If explained well the family will understand
and be able to do it.
Would it be possible to use this resource in the developing countries, just as it
has been mobilised in the industrialised ones? In order to know the real
situation better, visits were made to 15 developing countries. This study first
confirmed the impression that the situation for disabled people was indeed as
bad or worse than had been assumed. Disabled people virtually lived at the
bottom of the society, at the mercy of their families, because most them had
no income and no role in their society. A large proportion of those who were
born disabled or acquired a disability early in life, hardly ever survived the age
of 20. Diseases and malnutrition were common. Living conditions were at a

very low level and there were hardly any services. When expatriates had set
up services, they had a disturbing tendency to " transfer these to the
nationals" after a limited time. As the nationals could not raise the funds
needed, the quality of services deteriorated or were closed.
Other observations were more promising. Scattered examples of

"spontaneous, indigenous rehabilitation" were detected. Intelligent and
concerned family members had without any contact with professionals started
to rehabilitate their own family members. One could note examples of blind
persons walking around a village with the help of a branch of a tree; deaf
people and their families, who had invented a limited sign language; polio
victims had been trained to walk using parallel bars and given home-made
crutches. There were examples of primitive but functional braces and
prostheses. Evidently, there existed an indigenous "self-rehabilitation"

technology in the community. It seemed to be a good idea to further research,
copy and improve what had been observed, rather than to start by adapting
Western technology. The next step was to systematically describe the
technologies observed and to identify features common to all.
The technology work started in 1978. In 1979 the first edition of a Manual
called "Training in the Community for People with Disabilities" (TCPD) was
brought out (9). This manual has been revised several times and now appears
in about 50 translations. The use of indigenous technology has been
successful and in this way, cultural and educational problems often associated
with transfers of Western technology have been reduced. The Manual was
written directly for people, for those with disabilities, their families and
community members. CBR does not build on the "medical system", because
services for diagnosis and prescription will for a very long time be unavailable.
The problem of the person with a disability is defined using terms as

"difficulties to "move", to "see, to "hear", to "speak", to "learn". CBR
rehabilitation activities are aimed at problem-solving. TCPD has 30 training

packages and four guides, dealing with the most common problems. Great
efforts were made to simplify the language, using computer analysis. The
number of different words in the training packages was eventually brought

down to less than 1500, and the average sentence is 11 words long. The text
was illustrated with 2,200 line drawings. Community workers and the families
who worked with various parts of it have reviewed the text. Experts with a
long field experience of developing countries have been involved in a thorough
revision of the TCPD.
Other technology books are now available. Although the WHO Manual has
close to 900 pages, it cannot cover all details. More details have been written,
for instance, by the Helen Keller International, on how to train persons with
vision impairment for their daily tasks. Morris and House in Zimbabwe have
authored a Manual about communication; the text covers close to 500 pages.
(10)
CREATING A SERVICE DELIVERY SYSTEM.

The next question was: How can the technology reach people? The
"conventional system" had mostly been built on elaborate team systems. The
advantage is that when a number of qualified specialists get involved in the

rehabilitation process, it should increase the quality of work. The problems in
practice are many: it is costly, time-consuming, often complicated to co-

ordinate because of interpersonal conflicts and it makes many people with
disabilities confused.
For the situation in the developing countries, one would rather recommend a
service delivery system, which can be operated using local human resources
and multi-purpose personnel. To set this up, one must on a large scale
disseminate knowledge about disability and the skills of the demystified
rehabilitation methods. Various models have been tried out. Fig 1 gives an
overview of the model for CBR service delivery, built on present experience.
Figure 1 : CBR Delivery System
In the first line, people with disabilities and their families are engaged in the
training programmes carried out at home. A community worker (Local
Supervisor, Community Rehabilitation Facilitator) assists them. With a full-time

worker, the population covered by one worker could be about 5,000. This
person should receive sufficient training to be competent to carry out all the
activities described in TCPD. The training period is recommended to be about
10 weeks, and it can be modular. The community worker receives technical
supervision from a professional (Intermediate-level Co-ordinator or Supervisor,

Multiple-purpose Rehabilitation Worker), who has at least one year of training.
With a full-time professional, who has adequate transportation, about 100,000
people in a district can be covered.
In most developing countries, it is unaffordable to have specialisation on the

community and district levels. Consequently, the community worker and
intermediate-level supervisor need to acquire knowledge and skills concerning

all types of disabilities. The training should include functional training,
education, ability training and vocational aspects, income generation, security
and human rights, representation, and participation in mainstream

programmes for community development. As all rehabilitation cannot be
carried out in the community, a liaison needs to be established with the
available referral systems.
A more detailed CBR strategy regarding personnel was subsequently

developed (11), with the following principles.
1. The basic personnel should be chosen by the local community and live
there at easy distance from those who need the services.
2. There must be records, reports and evaluation of the work. The

community should participate in the evaluation
3. The community work should be micro-managed by the local

administration (council) of the community (village, urban quarter). The
community could either use already existing structures, such as the
Community Council, or set up a separate body such as a Community
Rehabilitation Committee. The Intermediate-level professional would be
attached to the District administration.
4. The CBR worker needs to have sufficient time to do the job with good
quality.
5. The CBR worker and the community committee members must be cost-
conscious. Costs should be held at a level that is economically realistic and
maintainable. An (unfortunately frequent) habit of referring all people with
disabilities to distant and expensive specialists and centres has to be
avoided. This is only possible, if the community worker and the
professional are well trained.
MANAGEMENT CONCERNS
To develop a system to eventually cover all in need is a challenge. The number
of moderately and severely persons with disabilities in the developing regions
of the world are cautiously estimated to be about 234 million in 2000, and will
grow to about 525 million in 2035. This increase equals 8.3 million per year or
close to 23,000 per day. Not all of them will need or would be prepared to
take part in a rehabilitation programme. With a cautious calculation, at least

70 million persons with disabilities would now benefit from services. By 2035,
they number will have more than doubled to 149 million. About 97 per cent of
those who need rehabilitation in the less developed regions of the world do
not receive any meaningful services. The needs are growing much quicker
than the annually added supply of services. Most services are still provided by
NGOs, which are based in urban areas and little, if any, help is available in
rural areas.
The systems for management started to be developed early and include:
1. Formulation of clear policies
2. Quantification of needs
3. Development of strategies and approaches
4. National Planning
5. Evaluation systems
6. Financing and budgeting
The effectiveness and sustainability of the system depends first on the

presence of a decentralised management system. The Government needs to
support the communities by providing the backbone of administrative, training

and technical back-up components of CBR. This requires a political
commitment by the government and the provision of dependable and
permanent financing. To develop sustainable managerial infrastructures and

plan for and find an adequate budget will require a considerable time.
Certain factors can contribute to secure a sustainable management system.
These include for instance, the realisation of the governments and local
authorities of the role that disabled people will eventually play as consumers
and pressure groups. Their rights to representation in a democratic society,
and to their share of the fruits of development must be respected.
EFFECTIVENESS OF CBR.
A large number of field studies and research have been made (12). A
summary of some of the studies is given in table 1.
Table 1: Summary of some CBR research.
Author Y Type of study Pla Main results

e ce
a of
r stu
dy
Mendis 1 Prospective. Bot 78% improvement
and Ne 9 sw
lsonGot 8 417 PWDs enrolled in CBR an
henbur 2 a,
g Unive
rsity Ind
ia,
Me
xic
o,
Pak
sita
n,
Sri
Lla
nka
O'Tool 1 Prospective. Gu 78% success rate
e,Manc 9 yan
hester 8 53 children, enrolled in CBRPo a 85% of mothersfound CBR hel
Univers 8 rtage assessmentsAttitudes of pful
ity family members
Mendi 1 5-year prospective studyof 7 vi Vie Improvements ofSelf-care 8
s, 9 llages3-step evaluation scale tna 9%
9 m
Kelaniy 2 Mobility 90%
a
Communication 40%
Univers
ity Family and community particip
ation 81%
Sri Lan
ka
Lagerk 1 Retrospective.Sample of 206 P Phil Improvement rate 91 %
vist,Up 9 WDs enrolled in CBR. 3-step e ippi
psalaU 9 valuation scale nes Social integration increase:3
niversit 2 Zi 2%-78%
y mb
ab 26% of children excluded from
we schooling started school
56% of adults started working

Sebeh, 1 Prospective, 18 months.Rando Eg See Fig 2.
9 mized study of 105 mentally r ypt
London 9 etarded children, enrolled in 4 CBR programme gave statistic
7 different programmes (MCH. O ally better results concerning:
Univers utreach, CBR and control grou child progress quotients (Griffi
ity ps) ths and REEL), parental attitu
des and helpfulness.
THE FUTURE OF CBR

25 years ago the concept and programme of Community-based Rehabilitation
was launched. It has become widely known and, on a mostly small scale,
practised almost everywhere; the WHO has reported that programmes using
the title of CBR exist in about 90 countries. It is clear that some of those are
still based in institutions or simple outreach programmes without adequate

involvement of the community. A "proper CBR programme" should include
communities' own decision about CBR, local provision of at least some
resources, their participation in evaluation and their micro-management.

Persons with disabilities and their families should be given influence.
Communities in a CBR programme must have "ownership" to the programme.
The realisation of such a decentralised and democratised system is still far
away.
CBR is built on common sense. It is part of a vision that eventually all persons
with disabilities will be seen and considered as first-class citizens, whose
neglected needs for services and opportunities, whose right to life, health,
education, income and security will no more be jeopardised. It is built on what

is realistic to do at each given situation. There is no reason to believe that
common sense will easily go away. However, what is seen as common sense
will change, as will the realities facing persons with disabilities. For this reason
CBR will change.
A number of developments will help CBR in the future, such as:
1. Encouragement to "self- development" and local self-government. It is

well known that too much control and regulations from above (from
Governments and various overseas donors) is unhealthy for development,
it crushes the entrepreneurial spirit.
2. A change of those education systems both at school and at home, which

today encourage "discipline and obedience" at the expense of the
development of the minds and creativity of young people.
3. Better access to mainstream development programmes. These are today

not enough concerned about the minorities among the poor.
4. Better quality and cost control of programmes for persons with disabilities
(13). Having a "bottom line" will help to create a better credibility and
sustainability of such programmes.
5. Training of a larger group of knowledgeable professionals, especially in

planning and management of CBR (14).
For most people with disabilities the situation can at present be expected to
become worse each year. Most of them are to be found among the poorest of
the poor, and will remain there until something substantial is done. We have
on our hands a growing moral, social, health and economic problem of vast
proportions. When will it go away?
*International Institute for Rehabilitation Management, Rue Conde, F-45230

Chatillon-Coligny, France.
REFERENCES
1. International Society for Rehabilitation of the Disabled. The Development
of Rehabilitation Services in Relation to Available Resources. New York,
1970.
2. Helander E. Disability Prevention and Rehabilitation. WHO document

A29/INF.DOC./I, Geneva, 1976.
3. Jonsson T. Special Needs education. UNESCO, Paris, 1992.
4. World Health Organisation .Rehabilitation. Technical Report Series,

Geneva, 1969.
5. Newell K (Ed) Health by the People , WHO, Geneva, 1976.
6. Schumacher K. Small is Beautiful. London, 1976
7. World Health Organisation. The Alma Ata Declaration, 1978.
8. Hardy RE. The issue of Theory in Rehabilitation. in S Regnier, M. Petkovsek

(ed) Rehabilitation, 25 years of Concepts, Principles, Perspectives.
Chicago, National Easter Seal Society, 1985.
9. Helander E, Mendis P, Nelson G amd Goerdt A. Training in the Community

for people with Disabilities, 4th edition. WHO, Geneva, 1991.
10. Morris J. House H. Let's Communicate. Rehabilitation Unit, Ministry of

Health, Zimbabwe, UNICEF and WHO, 1997.
11. Helander E. A Service Delivery system for Community-.based

rehabilitation. Guidelines for the design and training programmes for the
personnel. International Institute for Rehabilitation Management, France,
1999.
12. Jonsson T. Operations monitoring and Assessment of Rehabilitation

(OMAR). UNDP, Geneva, 1996
13. Helander E. Prejudice and Dignity. An Introduction to Community-based

Rehabilitation. 2nd Edition, UNDP, Geneva, 1999.
14. Helander E. Quality and Cost Control of Rehabilitation Programmes. A

Practical Guide on Cost, Effectiveness and Efficiency Assessments.
International Institute for Rehabilitation Management, France, 1999.
Table of Contents
Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 11 @ No. 1 @
2000
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6/19/2021 25 YEARS OF COMMUNITY-BASED REHABILITATION

Japanese | About DINF

THE CHALLENGE OF THE CONVENTIONAL SYSTEM FOR

express concern about the adequacy of the "conventional" type of services,

In 1974, the following summary of the situation was given in a World

"...rehabilitation services are practically non-existent or grossly

"...there is an apparent lack of national planning and co-ordination of

"...medical rehabilitation services have usually concentrated on

"...when advanced rehabilitation services and technology have been

appropriate education, if they are offered any education at al." (3).

for rehabilitation in the developing regions needed a number of substantial

of technology, so it would be better suited to the cultural, social,

POLITICS AT THE GLOBAL LEVEL.

politically possible? Would international bodies, such as the WHO, support

organisations with stakes in the conventional system? A WHO Expert Panel

problems in developing countries would be solved by an extension of the

"solution", these experts had in reality concluded that rehabilitation in the

sense" was obvious.

which had a number of examples of how a system of already existing primary

pledged to implement them.

available in their communities. Rehabilitation was declared as the fourth

component of the primary health programme, with promotion, prevention and

Member States to implement it. All concerned UN agencies have later on

transformations. These were times with many examples of political turmoil

leading to terror and tragedies in some countries; in others to student, worker,

peasant or military revolts, occupations of public buildings and demonstrations

challenged everywhere, and not-so-new principles of participation, social

However, some intergovernmental organisations for the time being walked

somewhat carefully, when using words associated with "democracy" and

World Economic Order" and "equalisation of opportunities". At those times, it

Governments, intergovernmental organisations and non-governmental

organisations (NGOs) had in the 1950s started to provide funds to the

policies and programmes concerning disability and rehabilitation. A first step

meeting the essential needs of persons with disabilities in the communities

about change. The "battle for CBR" was now to follow.

DEVELOPING CBR TECHNOLOGY

rehabilitation technology from the industrialised countries. Some knew well

There was little or no research on the self-perceived needs of the group of

Would it be possible to use this resource in the developing countries, just as it

of 20. Diseases and malnutrition were common. Living conditions were at a

up services, they had a disturbing tendency to " transfer these to the

needed, the quality of services deteriorated or were closed.

Other observations were more promising. Scattered examples of

crutches. There were examples of primitive but functional braces and

prostheses. Evidently, there existed an indigenous "self-rehabilitation"

The problem of the person with a disability is defined using terms as

"difficulties to "move", to "see, to "hear", to "speak", to "learn". CBR

rehabilitation activities are aimed at problem-solving. TCPD has 30 training

number of different words in the training packages was eventually brought

revision of the TCPD.

CREATING A SERVICE DELIVERY SYSTEM.

advantage is that when a number of qualified specialists get involved in the

practice are many: it is costly, time-consuming, often complicated to co-

Figure 1 : CBR Delivery System

Supervisor, Community Rehabilitation Facilitator) assists them. With a full-time

supervision from a professional (Intermediate-level Co-ordinator or Supervisor,

people in a district can be covered.

In most developing countries, it is unaffordable to have specialisation on the

intermediate-level supervisor need to acquire knowledge and skills concerning

and human rights, representation, and participation in mainstream

available referral systems.

A more detailed CBR strategy regarding personnel was subsequently

2. There must be records, reports and evaluation of the work. The