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24. JAHRGANG AUSGABE 2/2013
24ND YEAR ISSUE 2/2013
Behinderung und internationale Entwicklung
Disability and
International Development
Von CBR zu Community Based Inclusive Development, Teil 2
From CBR to Community Based Inclusive Development, Part 2Inhaltsverzeichnis Impressum/Masthead
Table of Contents Behinderung und internationale Entwicklung
Disability and International Development
Anschrift/Address
Schwerpunkt/Focus Wandastr. 9, 45136 Essen
Tel.: +49 (0)201/17 89 123
Von CBR zu Community Based Inclusive Development, Teil 2 Fax: +49 (0)201/17 89 026
From CBR to Community Based Inclusive Development, E-Mail: info@inie-inid.org
Part 2 Internet: www.zbdw.de
Für blinde und sehbehinderte Menschen ist die Zeit
schrift im Internet erhältlich./For persons with visual im
Editorial .......................................................................3 pairment, an electronic version of the journal is
available at www.zbdw.de
Redaktionsgruppe/Editorial Board
CBR, Health and Rehabilitation Isabella Bertmann, Christine Bruker, Jana Offergeld,
Sunil Deepak/Enrico Pupulin ...........................................4 Prof. Dr. Sabine Schäper, Gabriele Weigt
Schriftleitung/Editorship
Community Approaches to Livelihood: Creating Networks Gabriele Weigt
of Mutually Supporting Relationships
Redaktionsassistenz/Editorial Assistance
Peter Coleridge .............................................................13
Katharina Schabarum
Gestaltung/Layout
Reactions to the Rights-Based Approach: Amund Schmidt
Contextualising the CRPD in Cambodia
Valerie L. Karr/Stephen Meyers ......................................22 Druck/Print
Druckerei Nolte, Iserlohn
Establishing an African Disability Forum: An African Disa Bankverbindung/Bank Details
bled People’s Organisations’ Own Initiative Bank für Sozialwirtschaft
Towards Capacity Building Konto-Nr./Account number: 80 40 702
Shuaib Chalklen/Hisayo Katsui ......................................29 BLZ/BIC: 370 205 00 / BFSWDE33
IBAN: DE19 3702 0500 0008 0407 02
Die Zeitschrift Behinderung und internationale Entwick
Kurzmeldungen/Notes..............................................34 lung wird vom Institut für inklusive Entwicklung heraus
gegeben.
Editor of the journal Disability and International Deve
lopment is the Institute for Inclusive Development.
Literatur/Reviews .....................................................37
Hinweis: Für den Inhalt der Artikel sind die AutorInnen
verantwortlich. Veröffentlichte Artikel stellen nicht un
bedingt die Meinung der Redaktion dar. Die Veröffentli
Veranstaltungen/Events............................................42 chung von Beiträgen aus der Zeitschrift in anderen Pub
likationen ist möglich, wenn dies unter vollständiger
Quellenangabe geschieht und ein Belegexemplar über
sandt wird.
Please note that the authors are responsible for the
content of the articles. Published articles do not neces
sarily reflect the opinion of the editorial board. Papers
published in the journal Disability and International De
velopment may be reprinted in other publications if cor
rectly cited and if a copy is forwarded to the contact
provided above.
ISSN 2191-6888
2 Behinderung und internationale Entwicklung 2/2013
Disability and International DevelopmentEDITORIAL
Editorial
Liebe Leserinnen und Leser, Dear Reader,
in unserer letzten Ausgabe wurde das Konzept in our last issue, Community Based Rehabilita
Community Based Rehabilitation (CBR) hinsicht tion (CBR) has already been reflected with re
lich seiner Aktualität und Relevanz vor dem spect to its actuality and relevance in the light
Hintergrund der UN-Konvention über die Rech of the UN Convention on the Rights of Persons
te von Menschen mit Behinderungen reflektiert, with Disabilities (CRPD). We started with a ret
ausgehend von der Beschreibung seiner Ur rospect to the concept’s origins and further de
sprünge und Entwicklung sowie anhand eines velopment, and presented one example of real
konkreten Umsetzungsbeispiels im Bereich in ising CBR in the context of inclusive education.
klusiver Bildung. In the present issue, Sunil Deepak and Enrico
In der vorliegenden Aussage nehmen Sunil Pupulin focus on health promotion as one of
Deepak und Enrico Pupulin den Bereich der Ge the five key domains of Community Based Re
sundheitsförderung als einen der Kernbereiche habilitation. Inversely, CBR-strategies can play
des CBR-Konzeptes in den Blick. Zugleich wer an important role in the process of main
den die Potentiale des CBR-Konzept für diesen streaming disability in the area of health and
Bereich beschrieben. Peter Coleridge reflektiert rehabilitation. Peter Coleridge points out the
den Beitrag des CBR-Ansatzes zur Armutsbe contribution of CBR to the fight against poverty,
kämpfung durch die Unterstützung von Men not primarily by enabling persons to have their
schen mit Behinderungen in der vollen Entwick own income, but by creating opportunities to
lung und Nutzung ihrer Potentiale. Valerie Karr develop one’s full potential as a social human
und Stephen Meyers machen in einer Fallstudie being. In a case study in Cambodia, Valerie
aus Kambodscha die Notwendigkeit einer kon Karr and Stephen Meyers show the importance
textuellen Sichtweise deutlich: Die Kehrseite ei of a contextual view on effects of development
ner versorgenden Tradition der Unterstützung strategies: the downside of providing services
von Menschen mit Behinderung kann die eher for persons with disabilities may be that in or
zögerliche Entwicklung menschenrechtsbasier der to serve their members or beneficiaries, or
ter und die Selbstvertretung stärkender Pro ganisations prefer the provision of services over
gramme sein. Shuaib Chalklen (derzeitiger Son rights education and advocacy. An initiative to
derberichterstatter der UN-Kommission für so establish a continent-wide African Disability Fo
ziale Entwicklung für Menschen mit Behinde rum is presented by Shuaib Chalklen (the cur
rung) beschreibt gemeinsam mit Hisayo Katsui rent UN Special Rapporteur on Disability of the
den Prozess der Etablierung eines kontinentweit Commission for Social Development) and Hi
agierenden African Disability Forum, um zu zei sayo Katsui. The authors show that the realisa
gen, dass die Realisierung von Menschenrech tion of human rights depends on both social
ten nur auf der Basis von sozialer Sicherheit security and capacity building. The African Dis
und Capacity Building gelingen kann. ability Forum may contribute to awareness
Die Artikel beschreiben unterschiedliche raising about disability and human rights all
Wege der Bewusstseinsbildung zu den Rechten over the continent and can provide policy ad-
von Menschen mit Behinderungen und der Be vice to the national governments.
fähigung zur Übernahme der Souveränität über The articles show different ways of raising
die eigenen Lebensbedingungen. Wir wün awareness on human rights and of enabling
schen uns, dass die Artikel zu neuen Ideen in persons with disabilities to get the sovereignty
dieser Richtung inspirieren und einen Beitrag over their living conditions. We hope the arti
leisten zur Realisierung von Menschenrechten cles will inspire you to develop new ideas and
durch gemeinwesenorientierte Projekte. to take part in realising human rights through
community based concepts.
Ihr Redaktionsteam Your editorial board
Behinderung und internationale Entwicklung 2/2013 3
Disability and International DevelopmentARTIKEL/ARTICLE
CBR, Health and Rehabilitation
Sunil Deepak/Enrico Pupulin
Like all persons, persons with disabilities also have different health care needs, from childhood till old age.
Some of them also have specific health care and rehabilitation needs linked to their impairments. Only a
small percentage of persons with disabilities in the developing world has access to health care and rehabili
tation services. This article looks at the barriers faced by persons with disabilities in accessing health care
and rehabilitation services and the development of health care related activities in the CBR.
Introduction
conditions linked to old age.
The Alma Ata declaration in 1978 defined Certain disabilities can be associated with
health "as a state of complete physical, mental specific health conditions. For example, chil
and social well-being, and not merely the ab dren born with Down syndrome can also have
sence of disease or infirmity" (unpaged). Article heart problems and dislocated hips (Werner
25 of the United Nations Convention on the 1987:279). For such persons, needs for support
Rights of Persons with Disabilities (CRPD 2006) from general health care services may be
asks the States to “recognise that persons with greater.
disabilities have the right to the enjoyment of Specific health care needs of persons with
the highest attainable standard of health with disabilities: Not all persons with disabilities re
out discrimination of disability”. Articles 20 (ac quire specific health care and rehabilitation
cessibility) and 26 (habilitation and rehabilita services. For example, persons who are deaf or
tion) outline the measures States Parties should blind may not require any specific support.
undertake to ensure that people with disabili However, some disabling conditions require
ties are able to access health and rehabilitation specific health care, rehabilitation and assistive
services that are gender-sensitive. devices. These needs may be occasional, peri
The right to health is not only about access odic or ongoing and life-long. For example,
to health services; it is also about access to the persons with arthritis, diabetes or convulsions
underlying determinants of health, such as safe require life-long treatment for these conditions.
drinking water, adequate sanitation and hous On the other hand, a person with a disabling
ing. The right to health includes the right to be infectious disease such as leprosy or Buruli ul
free from non-consensual medical treatment. cer needs antibiotic treatment for a certain pe
The health-related entitlements include the riod to cure the infection.
right to a system of health protection, the right Rehabilitation services for persons with dis
to prevention, treatment and control of dis abilities: Rehabilitation is defined as "a set of
eases, access to essential medicines and par measures that assist individuals who experi
ticipation in health-related decision-making ence, or are likely to experience disability, to
(WHO/UNESCO/ILO/IDDC 2010, Health Mod achieve and maintain optimal functioning in in
ule:1). teractions with their environments" (WHO/
More than one billion people in the world World Bank 2011:96). Rehabilitation is a multi
live with some form of disability, of whom sectoral concept and includes different activities
nearly 200 million people experience consider such as barrier removal initiatives at societal
able difficulties in functioning. Studies from dif level. Rehabilitation, as a part of health care,
ferent parts of the world have revealed large targets improvements in individual functioning.
gaps in health care needs of persons with dis This article limits itself to those rehabilitation
abilities (WHO/World Bank 2011:xi). aspects that are part of health care services.
Rehabilitation services in the health care sys
Health Care and Rehabilitation tems can involve different departments depend
ing upon the specific disabling conditions. For
Needs of Persons with Disabilities example, a child with cleft lip or a person with
General health care needs: The general health reduced vision due to a cataract often need sur
care needs of persons with disabilities - as of all gical interventions.
persons - vary during different phases of their The kind of support required from the reha
lives, from vaccinations in childhood, to support bilitation services may change with time. For
for reproductive health care services as young example, persons who had a stroke may need
adults, and to care and treatment for health hospital level specialised health care support in
4 Behinderung und internationale Entwicklung 2/2013
Disability and International DevelopmentARTIKEL/ARTICLE
the acute phase. After the person has stabilised its determinants. Promoting healthy food
with full or partial recovery, home or day-care habits and doing regular physical activities
centre based support may be adequate. are examples of such activities. CBR works to
Many persons with disabilities also need to ensure that all health promotion activities at
take daily care of their bodies to avoid worsen community level are inclusive of persons
ing of impairments. Thus persons with paraple with disabilities.
gia due to spinal cord injury or persons with 2 Activities for prevention of health conditions
nerve paralysis due to leprosy need to take include screening tests and vaccinations.
regular and life-long care of their joints and These activities are also part of primary pre
limbs. An active role of persons and their fami vention (avoidance) of disabilities. For exam
lies is needed for daily self-care. ple, vaccination campaigns against polio
Assistive devices: Assistive devices are used have resulted in prevention of disabilities
to increase, maintain or improve the functional due to polio in large parts of the world. CBR
capabilities of individual with disabilities. Differ works to ensure that all the prevention ac
ent groups of persons with disabilities can tivities at community level are inclusive of
benefit from different kinds of assistive devices. persons with disabilities.
Some common assistive devices include 3 Medical care activities are for early identifi
crutches, wheel chairs and tricycles for persons cation and treatment of health conditions,
with mobility difficulties; prostheses (such as ar and their resulting impairments, with the aim
tificial limbs for persons with amputations) and of curing or limiting their impact on individu
orthoses (equipment to correct or support spe als. For example, early diagnosis and treat
cific body parts, such as shoes with braces); ment of leprosy and Buruli ulcer is important
hearing aids; and, white canes, magnifiers and for preventing disabilities due to these condi
audio books. tions.
4 Rehabilitation activities serve to limit the im
CBR and Health Care Services pact of disabilities, to prevent their worsen
ing and to avoid development of new im
Health is one of the five key domains of Com pairments. CBR programmes can play an im
munity Based Rehabilitation (CBR). The role of portant role in the maintenance phase of re
CBR programmes vis-à-vis health is "to work habilitation activities. For example, making
closely with health sector to ensure that the simple parallel bars in a village can be use
needs of people with disabilities and their fam ful for a person recovering from a stroke
ily members are addressed in the areas of who needs to learn to walk again.
health promotion, prevention, medical care, re 5 Assistive devices require support for user
habilitation and assistive devices. CBR also education, environmental adaptations, re
needs to work with individuals and their fami pair and replacement when worn out or bro
lies to facilitate their access to health services ken. CBR programmes can help in making
and to work with other sectors to ensure that all simple assistive devices. More often, they
aspects of health are addressed" (WHO/ help in providing information and facilitating
UNESCO/ILO/IDDC 2010, Health module:3). access to assistive devices produced in spe
cific workshops and centres. CBR can also
Role of CBR in Promoting Access to play a role in user training and repair of as
sistive devices.
Health Care and Rehabilitation
Services
Implementation of Health Care
CBR Guidelines include a module on the health
Activities in CBR
component of CBR. In addition, the supplemen Providing information and skills is a key role of
tary module of CBR guidelines includes infor CBR programmes. Persons with disabilities may
not be aware of different services available and
mation about three specific health conditions
how these can be accessed. Lack of information
mental illness, HIV/AIDS and leprosy (WHO/ can be even more significant among persons
UNESCO/ILO/IDDC 2010). living in rural and isolated areas, and in per
The five-by-five CBR matrix in the Guidelines sons from poor families.
divides the role of CBR in health care for per Mainstreaming means ensuring that all exist
sons with disabilities in five areas: ing health care and rehabilitation services are
1 Health promotion activities aim to increase accessible to persons with disabilities. CBR pro
the control of persons over their health and grammes can play an important role in promot-
Behinderung und internationale Entwicklung 2/2013 5
Disability and International DevelopmentARTIKEL/ARTICLE
ing mainstreaming. For example, specialised among health professionals and policy makers
assistive technology workshops based in large about dismantling of the different barriers
cities, often have difficulties in reaching and faced by persons with disabilities in accessing
collecting information about the needs for as the health care and rehabilitation services.
sistive devices from rural areas and small CBR programmes can also provide informa
towns. CBR programmes can facilitate access to tion to persons with disabilities about the ad
these services. vantages and disadvantages of different health
A research on the impact of CBR showed care and rehabilitation interventions so that
that in the areas covered by a CBR programme persons take informed decisions about their
the percentage of persons with disabilities hav own lives.
ing access to assistive devices was almost twice
the percentage in an area not covered by the Links Between Health Care Services
CBR programme (Biggeri et al. 2012).
However, sometimes there are no existing
and CBR
services and mainstreaming is not possible. Community level activities of CBR need support
Thus, a twin-track approach may be needed. from the referral services. Personnel skilled in
This means, where mainstream activities are rehabilitation technology who can train and
not available CBR programmes can provide or support community workers, and provide refer
promote the organisation of specific activities ral support, is necessary.
for persons with disabilities. Networking with Often specialised health service personnel
existing governmental and non-governmental have no or limited understanding of CBR pro
stakeholders is a crucial part of the twin-track grammes and activities. Thus, involving person
approach to ensure sustainability of services. nel from the referral services to take part in
Promoting self-care skills: CBR programmes training activities and meetings organised by
facilitate skills in self-care and autonomy in ac CBR programmes and visiting the CBR activities
tivities of daily living. A person may require can be useful for promoting awareness and
continued support and assistance in using new creating links with the health care institutions.
skills and knowledge at home and in the com The community alone cannot meet all the
munity after initial rehabilitation at a special needs of people with disabilities. In their vari
ised centre (WHO/UNESCO/ILO/IDDC 2010, ous roles, physicians, nurses, health assistants,
Health Module:49). midwives, and other Primary Health Care (PHC)
The WHO CBR manual (WHO 1989) pro workers provide preventive, promotive, curative
vides information for promoting self-care at and rehabilitative care (WHO 1994:12).
home and in the community. This can be Thus within the health services, CBR pro
achieved during home visits, when CBR person grammes should work in close collaboration
nel can provide information and skills to per with PHC services to ensure that all health care
sons with disabilities and their family members. and rehabilitation services are also accessible
Self-care can also be promoted through peer to persons with disabilities. If no CBR pro
support activities in the self-help groups. Fi grammes exist in some areas, personnel work
nally, it can be promoted through collabora ing in PHC services can promote a CBR ap
tions with rehabilitation centres, where persons proach by involving persons with disabilities
with disabilities and their family members can and their families in activities such as self-care.
visit to learn the different self-care skills.
Challenging barriers and facilitating access to Health Care Services, CBR and
referral services: Maintaining close links with
specialised rehabilitation services for the refer
Disabled Peoples’ Organisations
ral of persons in case of specific needs is an Historically, the concepts and understanding
other role played by CBR programmes. Facili about disability were closely linked to the
tating access to assistive devices produced at health care services. The coming together of
specialised centres is part of these activities. persons with disabilities to form their own or
The role of the CBR is to work with people with ganisations (DPOs) over the past decades, chal
disabilities and their families to determine their lenged those concepts and understandings. This
needs for assistive devices, facilitate access to process has also influenced the relationships
assistive devices and ensure maintenance, re between CBR and DPOs.
pair and replacement when necessary (WHO/ Classification of disabilities in the health care:
UNESCO/ILO/IDDC 2010, Health module:67). A medical model of disability that located the
In collaboration with DPOs, CBR pro disability in the individuals and proposed reha
grammes also work for creating awareness bilitation as an effort to the normalisation of the
6 Behinderung und internationale Entwicklung 2/2013
Disability and International DevelopmentARTIKEL/ARTICLE
person was developed in the industrial era. The habilitation workers and parents understand
international classification of impairments, dis the basic principles behind different rehabilita
abilities and handicaps (ICIDH) adopted by tion activities, exercises or aids" (Werner
WHO in 1980 was based on medical model of 1987:A5), so that they could adapt these to the
disability and proposed the following defini local contexts.
tions: In 1994, the first Joint Position Paper on CBR
Disease Impairment Disability Handicap
In the ICIDH, impairment was defined as by three specialised organisations of the United
"any loss or abnormality of psychological, Nations (ILO, UNESCO and WHO) presented
physiological, or anatomical structure or func the idea of multi-sectoral collaboration, where
tion", disability was defined as "any restriction different aspects of life including health, educa
or lack of ability to perform an activity in the tion and livelihood were considered as equally
manner or within the range considered normal important.
for human beings" while handicap was defined Thus initially, many of the ideas about CBR
as "a disadvantage for a given individual that were closely linked with health care and reha
limits or prevents the fulfilment of a role that is bilitation services. Many DPOs considered CBR
normal for that individual" (WHO 1980:13-14). as dominated by the medical model. For exam
During the 1970s and 1980s, DPOs pro ple, in an international consultation in 2003,
posed a social model of disability that focused Disabled Peoples' International (DPI) raised the
on physical, attitudinal, cultural and socio-eco issue of domination of a medical viewpoint in
nomic barriers created by societies. United Na CBR:
tions Standard Rules on the Equalisation of Op “Some of our regions report that CBR is still
portunities for Persons with Disabilities (1994) medically oriented, not considering the human
took note of the social model and proposed a rights, social and economic needs of individual
human rights based approach for looking at disabled persons. In other instances, regions re
disability issues. port that even when their input is requested,
The social model of disability influenced the their opinions are not equally weighted to that
modification of the concept of disability as de of professionals. Worst, there were instances
fined in the ICIDH. A new classification system when disabled peoples’ ideas were totally disre
called International Classification of Functioning garded. Their input therefore is meaningless”
and Disability (ICF) was developed by WHO in (DPI 2003:2).
2001 in consultation with DPOs. It adopted the However, in the recent past, collaborations
human rights approach and looked at the im between CBR programmes and DPOs have be
pact of a health condition on body functions, come much more productive. In 2009, in an in
structures, activities and participation. ICF fo ternational workshop on the United Nations
cuses on two kinds of factors - environmental Convention on Rights of Persons with Disabili
and personal factors (WHO 2001b). ties (CRPD) concluded in its recommendations
CBR and DPOs: The initial ideas of CBR came that CBR offers an important opportunity for
from the World Health Assembly in 1976, which implementation of CRPD in the field (Deepak
adopted a resolution encouraging the applica 2009).
tion of effective and appropriate technologies During the past decade, a large number of
to prevent disabilities while integrating disabil persons with disabilities and DPOs from differ
ity prevention and rehabilitation into the health ent countries took an active role in the prepara
programme at all levels including primary tion and field-testing of CBR Guidelines (WHO/
health care (WPRO 1991). UNESCO/ILO/IDDC 2010). Regional and
The first version of the WHO Manual, Train global CBR networks have been set up in which
ing in the Community for people with disabili persons with disabilities and DPOs are playing
ties, was published in 1979. Its main focus was key roles. At the same time, in many countries,
on the activities of daily living and simple exer DPOs themselves are running CBR pro
cises that could be done at home by the fami grammes.
lies and local preparation of simple technical
appliances (WHO 1989). Neglected Health Care Issues in CBR
In 1987, another CBR manual was pro
duced, Disabled Village Children, a guide for There are some issues related to the health
community health workers, rehabilitation work care needs of persons with disabilities that are
ers and families. Its aim was to help "village re often neglected in CBR.
Behinderung und internationale Entwicklung 2/2013 7
Disability and International DevelopmentARTIKEL/ARTICLE
Such neglected areas can be in relation to most of them were working with different
specific kinds of disabilities associated with so groups of persons with disabilities. 83% of the
cial stigma such as leprosy related disabilities workers identified home based care of persons
and psychosocial disabilities. For this reason, with disabilities as their most important learn
one module of the CBR Guidelines (supplemen ing need. 30% of them identified assistive de
tary module) contains detailed information vices as the area in which they lacked skills and
about three specific groups of persons - per an additional 11% felt that they needed train
sons affected with leprosy, persons with mental ing about the use of medications linked with
illness and persons with HIV/AIDS (WHO/ certain disabilities such as persons with convul
UNESCO/ILO/IDDC 2010). sions and mental illness (Deepak/Kumar et al.
Some other areas linked to health care that 2011:85-97).
require more attention from CBR programmes Lack of services in rural areas and small cit
are the taboo areas such as issues related to ies: Health care services, including rehabilita
sexuality, reproductive rights, violence, abuse tion services, are organised at different levels
and sexual abuse. Working at community level national, intermediate (such as provincial or
in close collaboration with the families, CBR district level) and peripheral levels (primary
programmes can play a significant role in look health care services). In most countries, all spe
ing at and raising awareness about some of cialised health care services and rehabilitation
these issues. services are available only at national level and
For example, during an international work in some big cities. A few specialised services
shop on Going beyond Taboo areas in CBR, par may also be available at district level.
ticipants agreed on the key roles played by CBR Thus, if persons with disabilities living in ru
workers in prevention of violence and abuse to ral areas and small cities need any specialised
wards persons with disabilities: "CBR workers health care and rehabilitation services, they
visit homes of persons with disabilities and this must go to a big city or the national capital.
helps to reduce violence and abuse in the fam Sometimes, specialised health care and reha
ily. CBR workers talk to families and they under bilitation support may be needed for prolonged
stand that there is no need to be ashamed of periods of time, for example among some per
their child’s disability" (Deepak 2013b:18). sons with severe disabilities. Lack of accessible
transport, loss of income, high cost of the serv
Challenges for Health Care and ices and leaving the families for long periods,
are some of the barriers blocking access to
Rehabilitation Activities in CBR health care services for persons living in rural
There are different challenges for an effective and isolated areas.
role of CBR programmes in health care, reha Many of the specialised centres are run by
bilitation and assistive devices related activities. non-governmental organisations (NGOs) or pri
Disability is closely linked to poverty. Poverty vate service providers. Often, these services are
also means limited resources for obtaining fragmented and nor the relevant ministry or the
health services and high risk of personal illness different organisations are able to overview the
(WHO 1998:136). Sometimes, the referral serv different responsibilities and activities. For ex
ices may even be free but for families of per ample, a survey in 29 countries of Africa (WHO
sons with disabilities living in isolated and rural 2004) showed that a large number of NGOs
areas, barriers exist due to the lack of accessi were involved in running rehabilitation institu
ble transport or high cost of the transport or tions and care services, however specific infor
due to the loss of income resulting from a pro mation about their activities was not available.
longed stay near the referral services. Physical and attitudinal barriers: Physical bar
Lack of skills among specific CBR workers: In riers, lack of understanding about the needs of
some countries, CBR programmes work with persons with disabilities, a narrow focus on the
community volunteers who receive limited disability rather than a holistic vision of the per
training. In other countries, CBR personnel is sons and all their needs and sometimes, nega
composed of full time CBR workers, but often tive attitudes of health professionals are signifi
they need to work with a very large number of cant barriers.
persons with disabilities. At the same time, they For example, hospitals may not have staff
may have a high turnover and they receive lim who knows sign language to communicate with
ited training. persons with hearing impairments. They may
A research involving CBR workers from seven not understand the specific needs of persons
countries showed that 96% of the CBR workers with vision impairment and thus, the health
were involved in health related activities, and education materials may not be accessible to
8 Behinderung und internationale Entwicklung 2/2013
Disability and International DevelopmentARTIKEL/ARTICLE them. Sometimes, orthopaedic laboratories that professionals, needs to shift to a chronic care provide some assistive devices are placed on model of services, with greater role of persons higher floors and there are no lifts, so that per with disabilities and their families in their self sons with mobility difficulties need to be carried care. over the stairs, to access these services. Difficulties of multi-sectoral collaboration: Among the persons with disabilities, women CBR programmes recognise the need for multi with disabilities often find it harder to get the sectoral collaboration, because the goal of CBR health care they need. Some common barriers is to contribute towards the empowerment of that they face include: lower beds or good persons with disabilities, facilitating an inde quality catheters are often not available; the pendent life style in which they participate in all hours the health centre is open may not be aspects of community life. Multi-sectoral col convenient; and, there may be few women doc laboration is therefore imperative if such a goal tors even though many women feel embar is to be achieved, as no sector alone can rassed to go to a male doctor (Maxwell/Belser/ achieve such a broad objective. However, multi David 2007:35). sectoral collaboration is beset with different In a workshop on sexuality and reproductive challenges including the lack of political com health issues for persons with disabilities (Dee mitment, rigid ministerial demarcations, poor pak 2013a) a CBR worker explained: "If a communication and vertical management pro woman with a disability gets pregnant, the cesses (O'Toole 1996:11-16). health workers ask her - 'How did you become Thus, if a CBR programme is not under the pregnant?' They cannot believe that a woman health ministry but is under another ministry or with disability can have sex or that a man if it is managed by a NGO, then collaboration would have sex with such a woman. Their atti with health care services may face difficulties. tude puts off women with disabilities. So when Sometimes, even when a CBR programme is women with disabilities are pregnant they don’t under a ministry of health, it may still face diffi want to go to hospital for check-ups". culties in accessing referral services as CBR pro Organisation of health services for acute grammes are usually under community health care: Health care systems were developed a services and do not have direct links with serv couple of centuries ago, when certain acute in ices dealing with institutions and hospitals. fectious diseases were the leading cause of ill Other challenges: In many developing coun ness and death. The health care systems were tries, national coverage of primary health serv designed to address pressing concerns. For ex ices is often patchy and incomplete. Health ample, testing, diagnosing, relieving symptoms, centres, even if they exist, lack trained staff, and expecting cure are hallmarks of contempo medicines and medical supplies. Globalisation rary health care. Moreover, these functions fit and linked changes such as increased privatisa the needs of patients experiencing acute and tion of services have created additional chal episodic health problems. However, a notable lenges. disparity occurs when applying the acute care For example, in China, the government template to patients who have chronic prob share of health expenditure fell by over half be lems (WHO 2002:29). tween 1980 and 1998, almost trebling the por The acute care model of health services lo tion paid by families. This led to the growth of cates expertise in the health professionals, private delivery systems for those who could af while the persons needing health care are seen ford them, and increased cost-recovery as passive receivers. On the other hand, schemes for services that were still under some chronic conditions are usually life-long requir form of public health insurance. In India, Gov ing continuous and regular care and life style ernment expenditure on health care accounted changes. This means that persons with chronic for just 18% of health care spending, with the conditions need to develop skills for self-care rest financed by users - making it one of the and take an active role in their own care. Im world's most privatised health care systems pairments are also chronic conditions that re (GHW 2005:19-20). quire life-style changes. Thus health care and WHO Guide on referral health services rehabilitation services responding to specific (WHO 1994:ii-iii) underlined "the inadequacy needs of persons with disabilities need to have of current services to meet the needs" of per active engagement with their clients to provide sons with disabilities - "In developing countries, knowledge and skills for self-care. even most basic services and equipment are The focus of the health and rehabilitation lacking". services, which are presently organised around In 1999, the Disability and Rehabilitation acute care and based solely on the expertise of team of the World Health Organisation (WHO/ Behinderung und internationale Entwicklung 2/2013 9 Disability and International Development
ARTIKEL/ARTICLE
DAR) conducted a survey to collect information of health conditions through: early interven
on rule 2 (medical care), rule 3 (rehabilitation), tion; integrated and decentralised rehabilita
rule 4 (support services) and rule 19 (personnel tion services, including mental health serv
training) of the U.N. Standard Rules on Equalisa ices; improved provision of wheelchairs,
tion of Opportunities for Persons with Disabilities hearing aids, low vision devices and other
(1994) from Ministries of Health (MoH) and assistive technologies; and training to ensure
Non-Governmental Organisations (NGOs) in a sufficient supply of rehabilitation profes
cluding organisations of disabled people. All sionals to enable people with disabilities to
together, 104 ministries and 115 NGOs re achieve their potential and have the same
sponded to this survey (WHO 2001a). opportunities to participate fully in society;
This WHO/DAR survey provided information - promote and strengthen community-based
about availability and access to different health rehabilitation programmes as a multi-secto
care and rehabilitation services, including infor ral strategy that empowers all persons with
mation about assistive devices and training of disabilities to access, benefit from, and par
health care personnel. The reports of this sur ticipate fully in education, employment,
vey identified different areas where health and health and social services.
rehabilitation services were inadequate and
where persons with disabilities faced different Future Trends in CBR and Health
barriers to access. For example, the survey
showed that in almost 50% of the countries, The ratification of the CRPD in a large number
less than 20% of population had access to re of countries along with the preparation of na
habilitation services (WHO 2001a, Part 1, sum tional disability action plans for implementing
mary:21). the CRPD, have strengthened the CBR pro
grammes in a number of countries. This ten
Promoting Greater Access to Health dency is likely to continue with the expansion of
CBR activities through national programmes.
Care and Rehabilitation Services CBR programmes are about working to
Considering the continuing difficulties faced by gether with persons with disabilities and their
persons with disabilities to receive health care, families at the community level. The gradual
in May 2013, the World Health Assembly ap expansion of communication and information
proved a resolution technologies over larger areas of the develop
"… people with disabilities have the same need ing world can offer newer ways of implement
for general health care as non-disabled people, ing CBR. For example, the role of CBR pro
yet have been shown to receive poorer treat grammes in providing information and promot
ment from health-care systems than non-disa ing awareness can be reinforced through mo
bled people; Also recognising the extensive un bile telephony. Similarly, online training oppor
met needs for habilitation and rehabilitation tunities can provide more cost effective ways of
services, which are vital to enable many people reaching persons with disabilities, families,
with a broad range of disabilities to participate DPOs and CBR workers.
in education, the labour market, and civic life, The majority of CBR programmes have been
and further that measures to promote the health developed in rural areas, though there are
of people with disabilities and their inclusion in some examples of successful urban CBR pro
society through general and specialised health grammes. Growing urbanisation across the
services are as important as measures to prevent world may require a fine-tuning of new ap
people developing health conditions associated proaches to implement CBR programmes in ur
with disability" (WHO 2013:5). ban areas.
This resolution invited member countries to: Linking CBR programmes with the post 2015
- work to ensure that all mainstream health development agenda so that international ef
services are inclusive of persons with dis forts like the Millennium Development Goals,
abilities, an action that will necessitate, inter the Mental Health Gap programme and the
alia, adequate financing, comprehensive in campaign around non-communicable disease
surance coverage, accessible health-care fa are inclusive of persons with disabilities is an
cilities, services and information, and train other key area that is going to influence imple
ing of health-care professionals to respect mentation of CBR programmes in future.
the human rights of persons with disabilities
and to communicate with them effectively;
- promote habilitation and rehabilitation
across the life-course and for a wide range
10 Behinderung und internationale Entwicklung 2/2013
Disability and International DevelopmentARTIKEL/ARTICLE
Conclusions paper on Community-based Rehabilitation (CBR).
Available at http://www.aifo.it/english/disability/
Health care including rehabilitation care and documents/reviewofcbr/DPI%20on%20CBR.pdf. Vis
assistive devices are key components of CBR ited on 20 March 2013)
programmes. People with disabilities need GHW (2005): Global Health Watch 2005-06 Report. Lon
health services for general health care needs don: Zed Books.
like the rest of the population, including differ MAXWELL, J./BELSER, J.W./DAVID, D. (2007): A Health
ent needs in different phases of life. While not Handbook for Women with Disabilities. Palo Alto;
all people with disabilities have health prob Hesperian Foundation.
lems related to their impairments, many will O'TOOLE, B. (1996): Multi-sectoral approach in CBR. In
also require specific health care services, on a Workshop on community-based rehabilitation and
regular or occasional basis and for limited or country experiences of CBR. Bologna: AIFO.
lifelong periods. WERNER, D. (1987): Disabled Village Children, a guide
CBR programmes promote health care activi for community health workers, rehabilitation workers
ties in terms of health promotion, prevention, and families. Palo Alto: Hesperian Foundation.
medical care, rehabilitation and assistive de WHO (1980): International classification of impairments,
vices. The health care related activities of CBR disabilities and Handicaps - A manual of classification
include information and skill provision, main relating to the consequences of disease. Geneva.
streaming, provision of some specific services, WHO (1989): Training in the community for people with
promotion of self-care and autonomy in activi disabilities. Geneva.
ties of daily living, facilitation and advocacy. WHO (1994): Community-based Rehabilitation and the
Persons with disabilities face many barriers health care referral services - a guide for programme
in accessing health care services. CBR pro managers. Geneva.
grammes, in partnership with primary health WHO (1998): The World Health Report - Life in the 21st
care services and in collaboration with referral century - A Vision For All. Geneva.
services can do a lot to overcome some of these WHO (2001a): The UN Standard Rules on the Equaliza
barriers. tion of Opportunities for Persons with Disabilities
Responses to the implementation of the rules on
medical care, rehabilitation, support services and per
References sonnel training.
BIGGERI, M./DEEPAK, S./MAURO, V./TRANI, J.F./KUMAR, WHO (2001b): The international classification of func
J. ET AL. (2012): Impact of CBR - CBR programme in tioning and disability. Geneva.
Mandya district, Karnatakam, India. Bologna: AIFO. WHO (2002): Innovative care for chronic conditions -
CRPD, 2006 - United Nations Convention on Rights of Building blocks for Action, Global Report, Non-com
Persons with Disability. Available at http:// municable Diseases and Mental Health. Geneva.
www.un.org/disabilities/default.asp?navid=14&pid= WHO (2004): Disability and Rehabilitation status - Review
150. Visited on 18 April 2013. of Disability Issues and Rehabilitation Services in 29
DEEPAK, S. (2009): CBR and U.N. Convention on Rights countries of Africa.
of Persons with Disabilities. Report of an international WHO (2013): Disability, Resolution EB132.R5. Executive
workshop. Bologna: AIFO. Board of the WHO, 132 session, 23 January 2013.
DEEPAK, S. (2013a): Social relationships, sexuality and WHO/ILO/UNESCO (1994): Joint Position Paper. Geneva.
reproductive rights and persons with disabilities. Re WHO/AIFO (2002): Equal opportunities for all: Promoting
port of an international workshop. Bologna: AIFO. CBR among urban poor populations - Initiating and
Available at http://www.aifo.it/english/disability/ sustaining CBR in urban slums and low income
documents/cbr_sexuality/Taboo_report_part01_So groups. Bologna. Available at http://
cial_relationships_Sexuality_ReproRights.pdf. Visited whqlibdoc.who.int/hq/2002/WHO_DAR_02.1.pdf.
on 27 March 2013. Visited on 27 March 2013.
DEEPAK, S. (2013b): Violence and abuse towards persons WHO/UNESCO/ILO/IDDC (2010): Community-Based Re
with disabilities. Report of an international workshop. habilitation - CBR Guidelines. Geneva.
Bologna: AIFO. Available at http://www.aifo.it/eng WHO/WORLD BANK (2011): World Report on Disability.
lish/disability/documents/cbr_violenza/Taboo_re WPRO (1991): Report Inter-country workshop on planning
port_part02_Violence_abuse.pdf. Visited on 10 April and management of community-based rehabilitation
2013. programmes. Manila, Philippines.
DEEPAK, S./KUMAR, J./ORTALI, F./PUPULIN, E. (2011):
CBR Matrix and perceived training needs of CBR
workers - a multi-country study. Disability, CBR and
Inclusive Development, vol. 22, no. 1.
DPI (2003): Disabled Peoples' International (DPI) position
Behinderung und internationale Entwicklung 2/2013 11
Disability and International DevelopmentARTIKEL/ARTICLE
Zusammenfassung: Wie alle Menschen haben auch Men Resumen: Como todas las personas, las personas con dis
schen mit Behinderung verschiedene Bedarfe in der Ge capacidad también tienen diferentes necesidades de aten
sundheitsversorgung, von der Kindheit bis ins hohe Alter. ción de la salud, desde la infancia hasta la vejez. Algunos
Manche von ihnen haben auch spezifische Bedarfe im Be de ellos tienen además, dependiendo de su deficiencia, ne
reich Gesundheit und Rehabilitation, verbunden mit ihren cesidades de atención o de de rehabilitación específicas.
Beeinträchtigungen. Nur ein kleiner Prozentsatz von Men Sólo un pequeño porcentaje de personas con discapacidad
schen mit Behinderung in Entwicklungsländern hat Zugang en el mundo en desarrollo tiene acceso a servicios de salud
zur Gesundheitsversorgung und zu Rehabilitationsangebo y rehabilitación. Este artículo analiza las barreras que en
ten. Dieser Beitrag richtet den Blick auf die Barrieren, de frentan las personas con discapacidad en el acceso a la
nen sich Menschen mit Behinderungen beim Zugang zu asistencia de salud y los servicios de rehabilitación. Además
Gesundheitsversorgung und Rehabilitationsangeboten ge se enfoca el desarrollo de las actividades de atención a la
genüber sehen und beschäftigt sich mit der Entwicklung salud que son relacionadas con la RBC.
von medizinischen und damit verbundenen Aktivitäten in
der CBR.
Résumé: Comme toute personne, les personnes handi Authors: Sunil Deepak is the Head of Scientific sup
capées ont différents besoins de soins de santé, de l'enfan port department of AIFO, Italy. He has contributed to
ce au grand âge. Certaines ont aussi des besoins spécifi the chapters on health and leprosy in the CBR Guide
ques liés à leur handicap. Seul un nombre restreint de per lines.
sonnes handicapées dans les pays en développement a un Enrico Pupulin is ex-head of Disability and Rehabilita
accès aux soins de santé et aux services de réadaptation. tion team at World Health Organisation (WHO/DAR)
Cet article observe les barrières rencontrées par les person and member of core group for the CBR Guidelines.
nes handicapées pour l'accès aux soins et les services de Contact: Sunil Deepak: AIFO, Via Borselli 4-6, 40135
réadaptation ainsi que le développement des soins de santé Bologna, Italy; E-Mail: sunil.deepak@aifo.it.
dans le cadre des activités de RBC.
12 Behinderung und internationale Entwicklung 2/2013
Disability and International DevelopmentARTIKEL/ARTICLE
Community Approaches to Livelihood: Creating Networks
of Mutually Supporting Relationships
Peter Coleridge
The article considers the primary task of development to be empowerment and the building of mutually sup
portive relationships. It views Community Based Rehabilitation (CBR) as an approach whose main purpose is
to build such relationships, and views livelihood development as central to the process. The language, phi
losophy, practice, and experience of CBR has an important contribution to make to the general debate
about creating a more equitable approach to international development.
Introduction
aid and development when viewed as a global
“Development is what happens when relation phenomenon (Maren 1997; Calderisi 2007).
ships strengthen for the common good” The central problem is that, if a system is based
(MacLachlan/Carr/McAuliffe 2010). on unequal relationships, it will fail, in human
terms. A system defined primarily by the pres
The framework for the Community Based Re ence of donor and recipient is inherently one of
habilitation (CBR) Guidelines (WHO/UNESCO/ unequal relationships characterised by domi
ILO/IDDC 2010), the CBR Matrix, recognises nance and subservience, and the distortion of
that there are many factors which combine to self-image in both donor and recipient.
make the life of a person with disability mean What does an inclusive society based on
ingful, and which can make inclusion a reality, equality look and feel like? CBR presents a
not a hope. Within the broad perspective repre model, which is based on equal, reciprocal re
sented by the Matrix, the Guidelines identify lationships where relationships strengthen for
livelihood, meaning work and employment, as the common good (MacLachlan/Carr/McAuliffe
the key to reducing poverty. There are a num 2010). This article illustrates some situations
ber of useful texts, which give practical advice where this is a reality. The language, philoso
on how disabled people can gain access to phy, practice and experience of CBR have much
work and employment (E.g. ILO 2008). to offer the general debate about creating
But the purpose of this article is not to sum more equitable approach to international de
marise the advice given in such texts. The issue velopment generally.
for the vast majority of both disabled and non A discussion of livelihoods provides an ideal
disabled people in poor countries is how to context in which to examine this approach1.
manage their lives within a context of very
meagre material resources. The article chal The Link Between Poverty and
lenges the view that poverty is simply a matter
of income, and considers the primary task of
Disability
development to be empowerment and the Disability is a complex topic and so is poverty.
building of mutually supportive relationships. It Both are context specific, and single definitions
views CBR as an approach whose main purpose do not apply in all circumstances. For this rea
is to build such relationships, and views liveli son the Convention on the Rights of Persons
hood development as central to the process. with Disabilities avoids giving a definition of
This article takes the view that the develop disability.
ment of livelihoods goes well beyond the ability Because disability has not been seen histori
to earn an income. It involves creating opportu cally as a mainstream development topic, little
nities to develop one’s full potential as a social research has been done on the direct link be
human being with increasing control over the tween disability and material poverty2. Aca
factors that shape one’s life, and the ability to demic organisations such as SINTEF (2003) and
contribute to the development of one’s commu University College London, and government aid
nity and society. agencies such as DFID (2004), are conducting
The article also illustrates how CBR can con research to obtain both quantitative and quali
tribute to the global discussion on the ethics tative data that can provide prevalence esti
and practice of international development. This mates and general links between poverty and
is not as far from the title topic as it may at first disability. However, there is at present scant
seem. There is much fully justified criticism of systematic data on the dynamics of how the
Behinderung und internationale Entwicklung 2/2013 13
Disability and International DevelopmentARTIKEL/ARTICLE
presence of impairments affects the economic implementation strategy and process is re
and social life of people in developing countries quired. The Convention is a set of standards
(Coleridge 2011). that need to be implemented through policy
Nevertheless, it is clear that disability is both and practice. CBR, as described in the new
a cause and an effect of poverty. Classic indica WHO Guidelines, is a comprehensive approach
tors of poverty such as poor sanitation, poor to making these standards a reality.
nutrition, dangerous work conditions and trans
port, and lack of medical services especially Community Based Rehabilitation
around birth, all conspire to produce impair
ments. There is also much evidence that, once
and Community Based Inclusive
impaired, a disabled person and his or her Development
family will find it more difficult to escape from As the CRPD marks a paradigm shift in attitudes
absolute poverty and those who become disa to disability, CBR has itself gone through its own
bled through accidents at work or other reasons evolution. Whereas in the early eighties it was
are more likely to descend into chronic poverty primarily focused on rehabilitation, it is now
(Coleridge 2011). Rates of material poverty viewed within a much wider framework: it is a
around the world are significantly higher in multi-sectoral strategy to address the broader
households with a disabled person (World Bank needs of disabled people, ensuring their par
2007). ticipation and inclusion in society and enhanc
However, we cannot measure poverty only ing their quality of life. CBR is now primarily
by whether passive material needs are met. about making the right to inclusion a practical
There are other needs: “the need to be crea reality. It is also a strategy for poverty reduc
tive, to make choices, to exercise judgement, to tion, in which poverty is defined in the broadest
love others and be loved, to have friendships, terms and includes both material and psycho
to contribute something of oneself to the world, social needs of the kinds referred to above.
to have social function and purpose. These are This radical change from rehabilitation to in
active needs; if they are not met, the result is clusion has given birth to the concept of Com
the impoverishment of the human spirit, be munity Based Inclusive Development (CBID).
cause without them life has no meaning” CBID is a way of describing positive, mutually
(Coleridge 1993, cited in Coleridge/Simmonot/ supporting relationships. Many practitioners
Steverlynk 2010:33). The denial of these needs prefer this label over CBR because CBR appears
is a feature of disabled people’s lives every to retain a focus on rehabilitation, when what is
where, not just in poor countries (Coleridge intended, described in the WHO Guidelines
2011). CBR, at its best, is an attempt to enable and enshrined in the CBR Matrix, is inclusive
people with disabilities to meet both their ma development from a community perspective.
terial and psychological needs, as the examples CBID therefore tends to be used interchangea
below illustrate. bly with CBR, but it means the same thing. In
this article CBR is used, with the understanding
The UN Convention on the Rights of that it is fundamentally about inclusive devel
opment, of which rehabilitation is a small (but
Persons with Disabilities essential) part.
The UN Convention on the Rights of Persons However, the idea of an inclusive society is
with Disability (CRPD) marks a fundamental not new. Traditional value systems still exist in
paradigm shift in attitudes and approaches to many countries, where mutual support mecha
disability. Persons with disabilities are not nisms have been part of the social fabric for
viewed as objects of charity, medical treatment centuries. It is important to make connections
and social protection, but rather as subjects between traditional value systems and the
with rights, who are entitled to and capable of CRPD and CBR. Capitalist economies, with an
claiming those rights and making decisions for emphasis on a competitive market, have
their lives. The CRPD views disabled people as tended to erode these value systems, but these
agents of their own change, and an inclusive two tools, the CRPD and CBR, can reawaken in
society as a partnership between disabled and us the age-old ideals of reciprocal, mutually
non-disabled people. supportive networks of relationships that are
While it is a major achievement, the CRPD essential to a just and equitable society.
will not change the lives of disabled people just
by its existence. People cannot eat rights and What Does Livelihood Mean?
legislation; they do not develop by an act of
parliament (Cornielje/Bogopane-Zulu n.d.). An Exclusion from economic activity is probably the
14 Behinderung und internationale Entwicklung 2/2013
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