ONE IN TEN
A PUBLICATION OF REHABILITATION INTERNATIONAL/UNICEF COLLABORATION ON CHILDHOOD DISABILITIES
VOLUME 18 - 1998
(English Version)
Community Based Services Increasing in Asia
This issue reports on community based programmes for children with disabilities in Asia. Community-based services are now growing beyond the pilot project stage in several Asian countries and adapting to a variety of situations. Many articles in this issue also describe the increased participation of disabled adults as staff and evaluators of CBR projects. This issue updates information from two previous issues of One in Ten: a 1995 issue on Disability in Asia and a 1990 issue (Volumes 8 & 9) on CBR.
IN THIS ISSUE:
" New Services for Filipino Children with Disabilities - page 2
" CBR for Children with Disabilities in Indonesia - page 4
" Disabled Women Help Bring Water to Indian Villagers - page 6
" Prosthetics and Orthotics for Cambodian Women and Children - page 7
" The Story of Sokhorn and a New CBR Project in Cambodia - page 9
" Development of a Community - Based Disability Programme in Vietnam
- page 11
" Selected Resources on Community-Based Rehabilitation Services for Children
-
page 14
KAMPI's Programmes and Services for Filipino Children with Disabilities
by Venus M. Ilagan
President of KAMPI, Philippines
In the course of its existence since it was established in July 1990, the
Katipunan Ng Maykapansanan Sa Pilipinas, Inc. (KAMPI) (the National Federation
of Disabled Persons of the Philippines) has instituted programmes and services
to assist its members. Disabled women and children are, foremost, given utmost
priority as they are perceived as the most vulnerable and marginalised members
of Philippine society. In terms of services, however, children with disabilities
are at the head of the line.
KAMPI's common undertaking with the Danish National Society of Polio and Accident
Victims (PTU) on the provision of free comprehensive rehabilitation and therapy
services for children with extensive physical and mental disabilities in the
Philippines can be considered as its cherished pride. Five Stimulation and
Therapeutic Activity Centres (STACentres) are now fully operational in key
urban and rural areas and provide needed physical therapy services to more
than 1000 children with disabilities in the Philippines. The services provided
through the centres are holistic and guarantee maximum rehabilitation and
therapy benefits. The name STAC has become synonymous with total life enhancement
reaching far beyond health care.
Perhaps what makes KAMPI's STAC unique from other centres is the fact that
its idea and basic concept of total rehabilitation and therapy are outcomes
of initiatives of persons with disabilities in partnership with non-disabled
technical persons. In other words, the idea and basic concept behind the STAC
come from persons with disabilities themselves and are translated into action
by hired technical persons whose collective commitment are in sync with KAMPI's
visions. In a way, the services provided are unique and different from others
that are provided by non-disabled persons, since the rehabilitation management
procedure is designed by persons with disabilities in co-ordination with a
rehabilitation doctor, which in turn is executed by hired physical and occupational
therapists.
Persons with disabilities of KAMPI play an active and significant role in
the provision of free comprehensive and therapy services through the STACentre.
Their presence as local partners in communities where the STAC is located
is direct encouragement for these children to become leaders themselves in
the future. During important meetings, parents and children with disabilities
alike mingle with leaders and supporters of KAMPI. It is through non-formal
meetings that they all get acquainted and collectively discuss the many dimensions
of disability with issues ranging from the mundane to the most important concerns
such as accessibility, education, and equalisation of opportunities. It should
be pointed out that STAC only accepts clients when accompanied by their parents
or any member of their immediate family. KAMPI believes that rehabilitation
of a disabled child must involve the participation of either one of the parents
or one member of the family since rehabilitation per se is a continuing process.
Moreover, integral to the service provided by KAMPI is a guidance and counselling
programme undertaken by the STACentre's Social Worker.
On the plight of disabled young girls. KAMPI observes no gender bias in the
provision of rehabilitation and therapy services in the STACentre. However,
women with disabilities, especially those who are organised and living in
grassroots communities, remain a priority in the allocation of KAMPI funding
assistance for livelihood projects.
On KAMPI's new actions on behalf of women with disabilities after the Beijing
UN Conference on Women and the 1997 International Leadership Forum for Women
with Disabilities. These two important meetings for women with disabilities
paved the way for KAMPI to plan and initiate steps to organise disabled women's
groups in the Philippines. Foremost, KAMPI is currently in the forefront of
organising women with disabilities all over the Philippines through its 208
member chapters.
Description of the Stimulation and Therapeutic Activity Centre - STAC
The Stimulation and Therapeutic Activity Centre is a project designed to
uplift the situation of poor Filipino disabled children aged 0 14 years. The
STAC is widely known today as an informal training centre that provides a
venue for socialisation and that extends free comprehensive rehabilitation
and therapy.
The STAC has become a popular initiative of Filipinos with disabilities to
make available low cost and comprehensive rehabilitation services to young
disabled children in the countryside, and is fast gaining support from local
government units for its full scale implementation.
Objectives
? To establish a free in door and out door stimulation and therapeutic training
workshop and activity centre for the physical, social, and psychological development
of the intellectually and severely disabled young adults and children;
? To make available to the intellectually and severely disabled children the
opportunities for socialisation and free play and other stimulating activities
given in the centre;
? To provide an area for in door and out door play activities outside the
confines of the home or school;
? To provide free and comprehensive therapy to indigent children with extensive
disabilities;
? To prepare disabled children for their education and eventual integration
into the mainstream society;
? To cushion the impact of "mainstreaming" or social integration;
and
? To integrate children with disabilities, especially those who live below
the poverty level, to become productive members of the community.
Some Services of STAC
? Capability Training - social workers and occupational therapy volunteers
introduce activities that will develop and enhance the disabled child's opportunities
to socialise and perform simple activities for daily living and capability
to participate in in door and out door play.
? Counselling - to provide opportunity for parents, volunteers, teachers and
social workers to share experiences, learn from each other and support one
another in a collective effort to help the disabled child.
? Occupational and Physical Therapy;
? Livelihood Assistance for Parents - grants or loans are provided to parents
of STAC beneficiaries if in need of financial assistance.;
? Provision of Appropriate Assistive Devices - including wheelchairs, crutches
and hearing aids among others;
? Referrals - STAC clients may be referred to hospitals for medical or surgical
procedure. Further, disabled children who have successfully gone through the
rehabilitation and therapy services given by the STAC are usually referred
to regular schools for their education.
? Sign Language instruction for hearing impaired children;
? Training for Independent Living for all children with disabilities;
? Parents' Training Programme (PTP) - facilitates the rehabilitation process
of the disabled child through the active participation of the parents. In
PTP, parents of disabled children are trained on basic exercises that are
easily carried out in their homes. This ensures the continuous rehabilitation
and therapy of their disabled children even outside of the centre. Physical
therapist interns and volunteers are dispatched by the chief physical therapist
to assist the parents and at the same time assess the progress of the disabled
child on a regular basis;
? Pre-school Training for Children with Disabilities - offering a special
curriculum designed to improve both cognitive skills and perceptual functioning.
All training is aimed at their eventual integration into regular schools.
At present there are five STACentres operating in Quezon City, Iloilo City,
Cogayan de Oro City, Tuguegarao, and Benguet Province.
Community-Based Rehabilitation for Children with Disabilities: Two Approaches
in Indonesia
By: Samir Ghosh, Chairman, Rehabilitation India
Introduction
Transformation of a society occurs when it is followed by basic social change.
Social change requires social action. Several approaches have been identified
and discussed at length by the social scientists and social anthropologists
which includes the Improvement approach and the Transformation approach. Community
Based Rehabilitation (CBR) is considered to be an improvement approach, and
hence has become a subject of controversy for the believer in transformation
approach. However, the promoters of CBR do not agree that CBR is a follower
of improvement approach as CBR promotes empowerment of persons with disability
in their own community. Historically CBR seems to be an offshoot of an already
existing system. In many societies in developing countries the system of caring
for persons with disability did exist but became dormant over an extended
period of time. A typical example that can be cited is the care of persons
with disabilities within the joint family system as well as through religious
outreach. In such societies where there are indigenous methods to deal with
disability, care should be taken regarding adopting any imposed and marketed
method of rehabilitation programmes.
I have found CBR is an approach which is community friendly and demands respect
for socio-political and cultural variances of a society. Whereas in one country,
empowerment of a person with disability can be realised better through the
direct and active participation of the disabled people themselves, it can
be diametrically opposed by another country whose political system is more
restricted. Hence, it is imperative to make the CBR programme flexible enough
to be accepted by both community and the Government. Having been a consultant
to several CBR projects both in India and abroad, I find it becoming more
and more clear that the magic word of "success" for such a project
lies primarily on its acceptability by the community as well as the existing
political system and support of the Government.
More recently, I have had the opportunity of being involved in evaluating
two CBR projects in Indonesia which further confirmed my above mentioned belief.
The two projects in "Yayasan Bhakti Luhur" and " Yayasan abdi
Kasih" projected two different experiments with the CBR approach in Indonesia.
However, I would not like to bring any controversy or personal opinion as
to which approach is right.
Yayasan Bhakti Luhur (YBL)
The Indonesian Government estimates that approximately 3.5% of population
has some disability which would total approximately 7 million people (total
population 200 million). Poverty, ill health, malnutrition, coupled with ignorance
remain common phenomena like any other developing nation. The tendency to
hide the incidence of disability in a family is fairly common in rural Indonesia.
Most of the non-governmental organisations are charity and/or welfare oriented.
The majority of them are working for or on behalf of disabled people. Only
a few are organisations of people with disabilities.
Yayasan Bhakti Luhur is a very large scale NGO in Indonesia; focused on care
and social integration of disabled children. Services are spread over the
island of Java, Flores, Bale, Moluccans, West Timor and Kalimantan. The headquarters
of YBL is located at Dieng Centre in Malang. The centre is well equipped,
consisting of institutional care, special school, vocational training and
CBR training centre. Over 1,500 children receive direct service through this
organisation: 95% of their beneficiaries are children who are intellectually
impaired, multiple disabled, deaf or physically disabled. The organisation
started in the year 1959 in Madiun and moved to Malang in 1975. YBL is a foundation
belonging to the ALMA Sisters.
Their CBR programme can be divided into two:
CBR training programme
CBR activities in the dessas (development zones designated by the Government.).
The CBR training programme is imparted at the Dieng Centre in Malang. They
have four years intensive training programme which includes both theory and
field work. They are also taught simple home care, how to make basic personal
assistive devices and physiotherapy. Most of the trainees are from high school
level or high school dropouts. Once trained, they are placed in the rural
communities where they interact with the parents of the disabled children
and impart skills related to ADL and other home based care to parents. Normally
they live in the local community or at the Wismas (Residential homes). YBL
has a number of other training programmes aimed at empowering the community
which includes training for the cadres selected from each community. It is
expected that these people would be available as community resource whenever
required for advice.
The direct CBR activities in Dessas are through community centres attached
to Wismas. These community centres have vocational training for both parents
and persons with disabilities themselves, a day care centre providing physiotherapy
and occupational therapy. The CBR worker is also responsible for integration
of children with disabilities in the normal schools.
The ALMA Sisters and YBL are quite clear on their mission. There is a logical
vision aiming at integration of disabled people in the community. The staff
of CBR centres are equipped through their training and provide services according
to the community needs. A general and carefully documented plan is framed
in accordance with Government policies. For example in most CBR centres the
chief advisor is the head man of the village who is a Government person. They
have fairly good relationships with the Pushkesmas (Primary Health Centre)
and assistance was given whenever necessary for complicated medical cases.
However, due to serious restrictions in the systems of Indonesian Government,
the extent of community participation and mobilisation has to be carefully
drawn out. Holding too many community meetings and mobilisation of community
resources is not encouraged by the Indonesian Government. Hence, YBL carries
out its CBR programme very cautiously and in a low profile manner so as not
to provoke the Government or any religious group.
The strategy towards financial independence of each CBR centre shows 20% cost
would be generated from the Dessas and 80% would be coming from the organisation.
A rolling fund has been evolved taking the next 25 years into account where
the interest would cover the cost to be borne by the organisation. This is
very clearly and logically laid out in their future plan of action. With such
clearly defined goals the survival of the organisation is guaranteed in years
to come.
Yayasan Abdi Kasih (YADIKA)
Abdi Kasih runs a day centre and special school for mentally retarded children,
at Martubung which is located 17 kilometres from Medan in the island of Northern
Sumatra. There are six Wismas each having between 10 12 mentally disabled
children and two caretakers. Unlike YBL, YADIKA's CBR programme is more of
an outreach programme. The caretakers of Wismas are also the CBR workers who
have a case load of 3 4 families. They pay home visits during the day time
and teach the parents as well as the disabled children the skill of Activities
of Daily Living (ADL). Generally, the cases are of two types: firstly, those
who cannot come to school due to multiple disability and secondly, those who
come to school and also get intervention at their home level. Interventions
are of different kinds which include: physiotherapy, teaching ADL, vocational
guidance and intervention at parental level. However, this organisation has
a weak link in their effort towards community resource mobilisation or community
participation. They prefer to concentrate at the family rather than at community
level. Success stories were found in various communities especially in the
area of vocational guidance and economic rehabilitation.
YADIKA is a small scale NGO run by 14 members (10 women and 4 men) with a
core group of 6 board members who are in charge of management of the organisation.
All the board members are non professional, charity oriented but having admirable
amount of dedication and determination. Though their intention was to start
a small charitable organisation which could satisfy the social need, the organisation
currently has gone beyond their capacity to manage the complexities. Perhaps
they received their first systematic planning input during our visit as external
evaluators. The objectives of the CBR programme (only six months old) are
not yet formulated though there is deep interest on the part of the Governing
body as well as the staff to intensify the approach.
Conclusion
The experiences with both the organisations in Indonesia suggest that CBR
is still interpreted differently by different organisations. Whereas western
academics perceive the approach to be more participatory-oriented, the million
dollar question would then be, what happens to societies such as Indonesian,
where participation is measured and dictated by the Government? Should they
adopt the traditional definition of CBR or should they make their own definition
to suit their socio-political needs? To me the end result seems to be most
important. Any programme which ultimately enhances the quality of life of
people with disabilities is the right approach and should be adopted without
bias.
Being a person with a disability myself, as well as a professional in the
related fields, I feel that the real empowerment of a person with disability
lies in enhancing his/her self esteem and this should come from the primary
source i.e., family. Accepting one's own disability is the key to success
for main- streaming and integration. Going back to several years in my own
life, I do remember the amount of trust and dependence that my family had
shown towards me from my very young age. This trust enhanced my self esteem
and my position as an equal partner with my other siblings in the prosperity
of our family's social and economic condition. It really does not matter where
the intervention is started. The key factor remains that the ultimate goal
of any CBR project must be to enhance the quality of life of the person with
a disability.
Disabled Women Help Bring Water to Indian Villagers
Following is a project description based on an interview with Samir Ghosh,
Chairman, Rehabilitation India, conducted by Kathy Martinez, Director, International
Division, World Institute on Disability, California, USA.
In the remote village of Chimpti in Subhum District of Bihar State in Northern
India, the concept of disabled women as part of the overall workforce is not
at all remote. In fact, they played a significant role in starting a project
that benefited their entire village.
In 1987, the villagers, primarily landless laborers and small-scale farmers,
identified the need for water reform. At that time, water was mainly available
only to large-scale farmers and people who could afford to have it brought
to them. The villagers began a movement to distribute water more equitably
throughout the village and surrounding fields.
The determination and actions of this movement attracted the attention of
India's Tata Iron and Steel Company. In collaboration with Ford Foundation,
they agreed to conduct a field trial by funding a small-scale water management
project.
Ford Foundation agreed to build a dam, purchase a water pump and set up a
pumping station. They stipulated that if they agreed to build a pumping station,
the women of the village should participate in the construction, own and operate
the business- so the women formed a cooperative. Women with disabilities made
up half their membership.
The women received basic training in masonry, water management, engineering,
and basic accounting. Women with and without disabilities worked together
on the construction of a dam for the project. They continue to work together
managing and running the business.
Women with disabilities are an integral part of this business, performing
tasks such as the day-to-day operation of the pump, regulating water levels
and volume, maintaining the pump itself and repairing cement streams built
for concentrated waterflow. They alternate with other project staff to share
the unpleasant task of collecting money for the water from customers.
This pioneering effort not only gives all villagers more access to water,
but it provides women who have traditionally been seen as weak and dependent,
the opportunity to participate in a viable business along with nondisabled
women, and to function and be viewed as valued members of their community.
Outreach Cambodia: The Challenge of Providing Prosthetic/Orthotic Services
to Women and Children
by Dudley Turner, Manager, Chief Prosthetist/Orthotist, The Cambodia Trust
Limb Project, Chairman of the Physical Rehabilitation Committee of Cambodia
The outreach referred to here is a means to reach and treat disabled people
who otherwise would be unable to, or find it difficult to, come to a prosthetic/orthotic
workshop for treatment. It normally involves an outreach team travelling to
remote areas and seeking out disabled people. People are then transported
to a workshop for treatment, or may receive limited treatment on the spot.
This service is free and often targets disadvantaged groups such as women
and children.
Reaching women & children
Generally, in developing countries, such as Cambodia, infrastructure is
very poor or non-existent. Many disabled people living in villages and remote
areas are completely unaware that they can get help. This is especially true
of people with disabilities such as polio, cerebral palsy, hemiplegia etc.
Often amputees are more aware, having heard from returning disabled soldiers
who have already received treatment. This lack of knowledge can be difficult
to overcome, as many people may be illiterate and unaware of the outside world.
Woman and children tend to be less informed as they are more likely to be
limited to the home and local environs. In addition, women are generally reluctant
to travel on their own, or with a child, especially if it is not clear what
benefits they may achieve. Time lost for working adults and actual cost of
travelling are certainly prohibitive factors for people with a hand to mouth
existence. Again it is likely to be women and children who will lose out.
Mothers with large families struggle to spare the time and effort for their
one disabled child.
Information campaigns involving posters, television and radio announcements
can be of some use. However, meeting people face to face is the best way to
get the message across, especially utilising examples of people who have benefited.
The Cambodian Trust and UNICEF
The Cambodia Trust (C.T.), a registered British Charity established in 1989
has been running two outreach programmes since 1993 (in Sihanoukville and
Kandal Provinces) in conjunction with its limb projects. Two further outreach
programmes are planned by C.T. in 1998, one in Koh Kong Province and one in
Kompong Chnang Province. These outreach Programmes are funded by UNICEF, focused
on disabled women and children. The programmes are run fully by Cambodian
staff. The personnel are as follows:
Prosthetist/Orthotist who provides actual treatment for the patients, assists
in training the outreach team, and co-operates with the physiotherapist, on
planning the workshop activities.
The Physiotherapist assesses all new patients, provides treatment, co-ordinates
the daily programme, and provides training for the outreach workers.
The Outreach Worker is a person trained locally to identify disabled candidates
for service and to assess the fit of prostheses and orthoses. Usually this
role is easier carried out by women than men i.e., disabled women and children
are more comfortable with a woman visiting them at their homes.
The Outreach Driver, familiar with the local area, also provides some assistance
to the outreach worker.
Each team consists of an outreach worker and a driver. Four wheel drive vehicles
are used, as many roads in rural areas are little more than dirt tracks. The
general procedure is for the outreach team to visit each village contacting
the headman, seeking his help and co-operation. An appointment is made for
the team to return and meet the disabled people in the village.
Normally some disabled people would already be gathered for this return visit
but others would have to be sought out by questioning locals and knocking
on doors. Those needing treatment are transported to the workshop, treated
then taken back to their homes. Follow-up is carried out every two months.
Disabled women field workers
In Sihanoukville Province the C.T. outreach programme has reached 100% of
its target group, and is now concentrating on maintaining the same level of
service. This has been achieved in part due to co-operation with American
Friends Service Committee Community Work with the Disabled Project, (C.W.D.),
established in 1995 to "improve the quality of life of the most disadvantaged
of the disabled in Cambodia, and their families, and to increase the possibilities
of disabled people to lead more normal, productive and purposeful lives."
C.W.D. employs disabled women field workers who work within the local community.
Several of these field workers wear prosthetic or orthotic devices, and are
able to demonstrate the benefits of these to other disabled people. They have
been able to work together with the C.T. outreach team in accessing new areas.
For example:
- One young boy was given a wheelchair by C.T. but was unable to get into
school, as there was no wheelchair access. C.W.D. was able to get the local
community to build a wheelchair ramp to allow the boy to go to school. A regular
weekly meeting is held between the organisations to allow an exchange of information
on patients.
Other outreach services in Cambodia
Veterans International (V.I.) have a large workshop in Kien Kleang in the
Municipality of Phnom Penh, where they have an outreach programme in Phnom
Penh, Kandal and Prey Veng, from which they serve Prey Veng, parts of Kompong
Cham and Svay Rieng, and a smaller workshop in the remote province of Preah
Vihear. In addition, a mobile team serves 4 Northeast provinces which are
difficult to access and sparsely populated. The mobile team brings patients
requiring devices to the Kien Kleang Centre in Phnom Penh and follows them
up in their province. The outreach programme is similar to C.T.'s, but it
also targets disabled men as well as women and children. V.I. will only begin
orthotic treatment for children when the child's family commits to completing
the full treatment programme, which may include surgery. V.I. also provides
wheelchairs. UNICEF Cambodia is funding part of this programme.
The American Red Cross has a workshop in Kompong Speu province and operates
an outreach in that area, targeting mainly amputees (men, women and children).
They are planning to treat more orthotic patients in 1998. A.R.C. can also
assemble wheelchairs, which come in kit form and give them to the patients
on the spot from their vehicle.
All organisations provide their services free and most operate surgical referral
programmes.
Next Steps
Most prosthetic/orthotic projects in Cambodia have been set up to deal with
the large numbers of landmine victims. Often new amputees are congregated
at a few main hospitals and are easily accessed for initial treatment. Once
hostilities cease in Cambodia, then the next largest category of disabled
is those living in remote areas and requiring orthotic treatment. Unless these
people are given help to get to the prosthetic/orthotic workshops, then many
of them are unlikely to ever get treatment. This is indeed tragic in the case
of children with easily corrected deformities such as clubfoot. It is probably
true to say that if you do not have a large number of disabled on your doorstep
then an outreach programme is almost a necessity in a developing country.
The Story of Sokhorn and a New CBR Project in Cambodia
By Sophie Sauvey, Occupational Therapist, Handicap International, Cambodia.
In 1997 the Programme for Economic and Social Rehabilitation (PRES) of Handicap International/Cambodia established a project for disabled children. This is the story of the project as told by a rehabilitation worker called Sokhorn. It is also the story of Sokhorn, who was recruited by Handicap International in Cambodia to work with the PRES programme. The programme has been financed in part by UNICEF since 1996.
Background
"I was born in 1970 with a clubfoot and cannot walk normally. I was
a very enthusiastic boy enjoying life. But when I was 5 years old, the Khmer
Rouge took over the country. It was the end of peace, freedom, and happiness.
Therefore, my family and I decided to leave Cambodia to survive. After that
I had to spend eight years in the camps on the Thai border.
"After 1991 I came back to my country. Because my mother had just died,
I was homeless, landless and jobless and was repatriated to a province where
I didn't know anybody; I was like a foreigner. At that time it was so difficult
to live, to survive. I was 23 years old but had no work experience and I was
a disabled person and nobody wanted to hire me, not even NGOs. They told me
that they recruited staff and accepted disabled persons, too, but in fact
they were only words. I faced rejection and segregation and felt hopeless.
Then, I was very lucky because Handicap International was hiring disabled
people, and after a while I became part of the staff of PRES as a monitor.
I was so happy and communicated this to each person I met.
"My job consisted of finding the disabled persons living in a province
and visiting them driving a motorbike. After filling out an interview form
for each disabled person, all the staff together prioritized the ones who
were most in need of help in the areas of rehabilitation, social and/or economic
assistance."
The PRES programme established in 1993, grew out of the work of the Handicap
International team which had assisted in the repatriation of 315 severely
disabled refugees from the camps at the Thai border in 1992-93. Most of them
had no family (or did not know where their family was located), no job, no
income, and psychologically they were not strong. The repatriation team provided
direct assistance to reintegrate the disabled returnees into their families
in Cambodia. Because the material assistance provided responded to immediate
needs but did not support self-reliance of the family in the long term, it
was decided to restructure the repatriation team, increase staff and change
the focus of the activities. The PRES programme aims to assist severely disabled
and economically disadvantaged persons to gradually develop physical autonomy,
financial independence and social integration. This assistance included social
counseling, advocacy, referrals to services, and direct economic assistance,
mostly grants or credit given for starting up small-scale income generating
activities. Today the PRES programme implements activities in the eight most
populous provinces of Cambodia.
Prior to 1997, PRES assistance to disabled children focused primarily on counseling
families about how to take care of and integrate children into schools in
the community and referring older children for vocational training. Recognising
the needs of severely disabled children and the importance of family and community
involvement in addressing these needs, PRES initiated a new community based
project for disabled children in 1997.
Becoming a rehab worker
The new project was established in two districts each of Takeo and Kompong
Cham provinces. An expatriate occupational therapist with community based
rehabilitation (CBR) experience was recruited to provide training and technical
follow-up to four Cambodian rehabilitation workers who were selected to work
in pairs in the two provinces. Sokhorn was very interested in that job. He
wanted to become a "rehab worker" in order to help disabled children.
"One more time I was very lucky and so happy to be selected. During one
month I attended a training in Phnom Penh about children with disabilities,
how to care for them in the activities of daily living, how to stimulate them
to move, to play, to communicate, to grow better, and to get integrated within
their family and community (to go to school, to make friends) and how to train
the caretaker of the child. Every day I ride on a motorbike and visit the
families who have disabled children and sometimes it is difficult because
of the weather. In the rainy season, the paths become so bad; there are many
holes and it's so slippery and many times I have to walk and push the bike
because of flooding (the water comes up to my belt), but I never stopped.
My country is so poor."
Case study of Ny
"This is the story of Ny, a young girl who was born with cerebral palsy.
She is nine years old and before she could not do any kind of self care. She
could not take anything with both her hands and any movement that she intended
to do was disturbed by an abnormal one; her balance was very poor and she
often fell. And often she had epileptic fits.
"First I explained to the family that they should go to the hospital
with Ny in order to treat her fits and get some medicine. One day I went with
the mother to refer Ny to the hospital. The doctor gave her appropriate drugs
and until now the fits have totally disappeared.
"I decided to make special toys to train her to take things with her
hands. I wrote down everything in a booklet and left it with the family so
that they could have her repeat the training every day. The family understood
well the goal and got fast involved in the care of their daughter. Therefore,
after a while, Ny played easily by herself. So it was now time to show her
that she could also take a spoon by herself and eat without help. Ny was quickly
able to do it and was very proud.
"We also did exercises with her to improve her balance by playing ball
with her in different positions such as sitting down and standing up. Four
months later she could walk and play with other children. The family was very
happy to see the progress of Ny and the collaboration with them was great.
"Before the start of the new school year I explained to them, that Ny
should go to school. They were so surprised; they never had thought about
it before. They asked me how could she attend the class? And what if she gets
a fit? And the school was two kilometers-far from their home. I showed them
that she can write and draw, too, and they were convinced and Ny told them
that she would like so much to go to school. I went to meet the director of
the school to explain to him about the problems of Ny. They agreed. And last
October she started to go to school. She goes by foot and enjoys it so much.
After seven months of regular follow-up, Ny made a lot of progress.
"At that time, too, I started to bring together families with disabled
children. Many disabled children were living close to each other. I try with
the other rehab worker to give them the opportunity to talk about their problems,
but also to see that they are not alone, that other families share the same
problems, the same feelings. It's just the beginning but the people are volunteering
to continue and feel interested.
"At the end of 1997 I became a trainer for caretakers of disabled children
at the nutritional centre in Phnom Penh. And later I became a trainer at a
CBR training for physiotherapists from the provinces. The next step will be
for me to train new rehab workers, who will work in another province.
"I have gotten more confident and I have learned how to help the children
get confidence in themselves, too. When I try to convince families how to
care for their children, I learn how to train other people, but I never feel
like a teacher. I just try to share my experience with other people so they
can benefit from it.
"Last September I decided to have an operation on my foot because I got
braver and wanted to walk more easily. It is not perfect. I cannot walk normally,
but I persevere. And now I am a good example to show the families that if
they want something, it is possible, although it is difficult."
Toward a 'Child - Focused' Approach: The Development of a Community - Based
Disability Programme
Hang is the 13 year- old daughter of a local policeman. She has no formal
schooling, but can do almost any task to help her mother around the house.
She hardly ever goes out though, as she is often teased by other children
in the street. Her parent's 'biggest concern is her lack of social relationships,
and her most immediate need for friends and to increase her self - confidence.'
Her father has known about the CiC programme since the start, but waited over
a year before asking to participate. Maybe he did not see his daughter as
'disabled', or maybe he was weighing up the shame of telling others about
Hang's problems, with the potential benefits for his daughter.
By Hazel Jones, Special Needs Adviser, Save the Children/UK,
Ho Chi Minh City - Vietnam
This article first appeared in SEAPRO Forum Vol. 4, No.2, July 1996, a journal published by Save the Children (UK) SE, E Asia & Pacific Regional Office, Bangkok, Thailand.
Introduction
"Too old, too old", complained Thuy, rejecting the grubby 1,000
dong note I was offering for her collection. Watching his 18 year-old sister
crouched on the dirt floor of their one-roomed house, her brother explained
that she only likes new notes: in fact they are her only interest in life.
Ms. Nhieu, SCF disability project officer and I were visiting a community-based
rehabilitation (CBR) project on the outskirts of Ho Chi Minh City (HCMC) ,
and had asked to visit some disabled children whom the Commune Health Worker
considered 'rehabilitated'. Thuy was one of them, "Look, we taught her
how to walk!". And, sure enough, after carefully gathering up her money
she walked, fairly steadily, 2 metres to the bed. Her newly acquired skill
is unfortunately of limited value to her, though, as she rarely leaves the
house, has very limited self-help skills and can never be left unsupervised
- a great burden on her poor family.
If this young woman was a successful example, Nghieu and I were perplexed
as to the health worker's concept of rehabilitation. We finally concluded
that for her it meant physiotherapy, and that "rehabilitated" meant
"physically mobile". There was surely something lacking in this
CBR programme.
Disabled children are by no means, rejected or neglected in Vietnam, either
by society - disabled people can be seen out and about in the HCMC - or by
authorities. The National CBR Programme implemented by the Ministry of Health
has widespread coverage, with 7,649 disabled children in programmes in 11
provinces (Tran, 1995). The Committee for the Protection and Care of Children
(CPCC) has the responsibility for the National Plan of Action for children
throughout Vietnam, which includes "care of disabled children".
Usually this care follows a standard format, providing gifts of rice, milk
and money on festivals and National Children's Day.
Developing the programme
We wondered if it was possible in Vietnam, with its intricate bureaucracy
and top-down decisions -making structures, to develop a programme to address
the real needs of disabled children and their families. To achieve this, it
would have to be established by a non-sectoral body, (i.e. within neither
Health, Education nor Welfare Department), but yet with the power to co-ordinate
with different government sectors-health, education, social welfare, etc -
as required. So the first pilot "Care in the Community" programme
(CiC) for disabled children began in Ward 21, Binh Thanh District (1) Ho Chi
Minh City, in April 1995 under the authority of the Ward People's Committee.
Instead of applying one standard solution for all, this new project proposed
to find out the actual needs of individual children and their families, and
to plan activities and solutions based on the findings. Such a task would
be impossible for the single CPCC official of the Ward, so a team of volunteers
would be recruited from the community for this purpose.
Volunteering is a familiar concept in Vietnam. Since Independence in 1945,
many national social and educational campaigns have been carried out, such
as literacy, family planning, vitamin A, polio vaccination etc., all of which
depended heavily on volunteers mobilised from the community.
There are nevertheless differences from the European understanding of the
term: volunteers are "mobilised", i.e "selected" to be
involved; commitment is clear, e.g. one day a month, or a short term "campaign"
lasting a few days; there are clear instructions from the national level to
be followed, and a small allowance is usually paid, e.g., 10, 000 dong a month
(2) for the Nutrition Programme.
Volunteer recruitment
A problem often faced by CBR is the high drop-out rate of volunteers, which
has also been noted in Viet Nam, (Kristianisson & Lijlestrom, p.4) One
contributing factor may be this process of 'selection' rather than 'volunteering'.
The Ward had a pool of regular volunteers whom they proposed to 'mobilise',
but because of the long- term nature of this programme, it was agreed that
people should be invited to genuinely volunteer, rather than be selected.
So 22 of the Ward's regular volunteers genuinely volunteered (more than needed)
and began an introductory training, of whom 16 completed the course and started
visiting families. A year later, three have left and three more joined, leaving
still 16 volunteers. Ages range from 33 to 73, but most are retired people,
both men and women. Two are mothers of disabled children.
The CPCC already had a list of disabled children in the Ward, so a survey
was unnecessary. Then, as activities began and news about them spread, previously
'unlisted' disabled children were brought forward by their parents. These
are currently about 30 children involved in the programme on a regular basis.
Need identified
Initially, volunteers tended to focus mainly on the problems of poverty and
malnutrition. The introductory training helped volunteers to look at the child
more in a social context, rather than focus only on her disability, then to
consider what could be done to enable her to participate more fully in the
life of the family and community. As training and subsequent family visits
proceeded, volunteers found that the needs of families fell into four main
categories : education, physiotherapy, health (medication or other treatment),
and economic. For example, Trang was an eight year-old girl with cerebral
palsy, unable to stand up on her own, with severe learning difficulties and
no language. The family lived in a one-room shack with no water or sanitation,
over a stinking canal. They had no ho khau (3). The mother has no education,
and to earn money, carried water for neighbours. She also had TB. The Father
was a cyclo driver, and often came home drunk.
How many different problems faced this family, and where to begin! With health
or physiotherapy, economic or bureaucratic issues, mobility, or education?
The volunteer's first priority was the mother: if her health deteriorated
it would clearly affect Trang's care. Without ho khau she could not get TB
treatment, so the first step was to negotiate with local officials for temporary
registration, with which she could get a 'health card', entitling her to free
treatment. She then accompanied her on initial hospital visits, and helped
explain what the doctors were saying. At the same time, a physiotherapist
showed the mother some simple exercises to help strengthen Trang's legs, and
the SCF special education advisor made suggestions to encourage the child
to feed herself.
The mother's health was slow to recover, because of carrying Trang around,
a physically exhausting job and poor nutrition. Enlisting the help of a second
volunteer, they contacted a city rehabilitation centre, who agreed to loan
a wheelchair to the family. The problem of the family's low income still remains
however: with no ho khau and little education, neither parent can find anything
other than casual work. A third volunteer has started to teach the mother
to read, but at the moment she is earning by washing clothes. The father's
drinking remains a problem.
Volunteers have had to take a flexible and varied role: providing practical
and emotional support, liaising with necessary officials on behalf of the
mother and child, learning physiotherapy techniques, and identifying other
sources of support, e.g.. From other volunteers and officials, and even one
volunteer's husband, who was enlisted to try reasoning with the father.
Various forms of activity have taken place:
* A supportive relationship built up, in order to understand the underlying
needs of family;
* Access gained to existing free service e.g. health treatment, equipment;
* Better use made of existing specialist personnel, by inviting a hospital-based
physiotherapist into homes to give advice to groups of parents;
* Direct advice on self - help skills provided by programme personnel, as
there was a gap in this area.
Child-directed or child-focused
The CiC approach evolved out of discussions amongst the volunteers themselves.
One view was that a disability programme should be directed solely at the
children and their disabilities. In Trang's case, this would have meant the
main focus on her inability to walk, and the family would be instructed in
how to carry out regular physiotherapy exercises. Other aspects of the family's
situation would not be considered, so from the family's point of view, the
programme could have turned out more of a burden than a support. A contrasting
view, which most volunteers supported, held that the programme could not focus
on the child alone, without looking at other problems which affect her.
Programmes activities are now developing towards the SCF terms 'child-focus'.
This 'does not mean that all activities involve children but that children
are the ultimate beneficiaries'. (Theis, p8) . Trang was not directly involved
in the TB treatment, for example, but she has certainly benefited from her
mother's improved health. Whatever the programme activities, however, their
impact is ultimately measured by improvements in the child's well-being.
Key issues
Several features of the 'access' approach make this programme innovative
in Vietnam:
o Training in Vietnam is synonymous with 'transfer of information'. The training
organised by SCF however is based on adult education principles: building
on participant's own skills and experience, and encouraging them to come up
with ideas and solutions themselves. It has results in a programme which draws
on the considerable experience of volunteers, their understanding of the government
system, and their knowledge and access to locally available resources, both
human and material.
o Control and decision - making. At first, planning and decision - making
were carried out by the Ward CiC Committee, after consultation with the volunteers.
This was an unusual departure in a system where officials usually just issue
instructions to volunteers. Some responsibility, and even cash advances, were
delegated to volunteers to follow up particular problems, as in the above
case of the mother's TB treatment. After one year, the officials recognised
that the solutions they could provide were limited, and invited four volunteers
onto the Committee to take responsibility for planning and implementation
of activities. Since then, volunteers have been enthusiastically taking initiative
instead of having to wait for decisions from the officials, and as a consequence,
activities have increased in their scope, frequency and relevance to children's
needs
o Multi - disciplinary approach. National CBR in Vietnam is promoted under
the direction of the Ministry of Health, and although personnel from all government
departments are involved on Steering Committees, CBR tends to be seen as a
health issue, almost synonymous with physiotherapy, and tends not to address
the wider needs of families. By contrast, the CiC programme was established
by the People's Committee, who have the power to enlist the co-operation of
any department or organisation who needs to be involved, whether Education
or Health Service, CPCC or Women's Union.
o Exploiting existing resources. In HCMC, a variety of specialist disability
services already exist, but they are limited to institutions, are not fully
exploited and remain inaccessible to the majority of those in need. There
are also community programmes dealing with wider issues of poverty, health
and employment. An important role of CiC volunteers is to help families gain
access to existing services or programmes which meet their needs. With a little
extra awareness, most disabled children can be served by existing services,
schools and programmes. The key is to raise understanding of the needs of
disabled children, not only among local people, in recognising the resources
and skills in the community, but also among the government services and decision
- makers, so that they recognise their own role and responsibility in providing
access to all children. This is a small step towards 'moving beyond children's
needs and addressing children's rights,' a perspective which 'squarely assigns
responsibility for children's developments to society and government'.
* Influencing. The Ward officials and volunteers have been fully involved
in shaping the programme from the start; they recognised and are confident
about their strengths, also willing to openly examine and remedy any weaknesses.
They are thus strong advocates for their own programme, which is a great force
for influence: a Party Secretary can persuade another Party Secretary, a parent
volunteer can persuade another parent in a way that SCF can never hope to
do.
* District Binh Thanh CPCC, previously sceptical, are now wholeheartedly in
favour of the programme, and have themselves organised expansion of the programme
to two further Wards of the District.
* The City level CPCC is enthusiastic about the CiC programme, and has introduced
SCF to Binh Chanh, a largely rural District on the outskirts of HCMC. After
an initial awareness - raising workshop at the District People's Committee,
two Communes have volunteered to start pilot CiC projects
.
Issues still to be addressed
o Information dissemination. Increased demands are being made on Ward 21
to share information about their programme with other Districts, which is
draining on their time and energy. Alternative ways of sharing such information
need to be considered, such as written information, photos, video, etc.
o Training uses local resource people wherever possible, but it is still being
facilitated mainly by SCF staff. There is a major gap in trainers with participatory
skills.
o Quality vs. quantity. It is difficult to balance the demand to expand to
new Wards and new Districts, with trying to maintain good quality work with
requires careful follow - up and support.
o Root causes. Wider benefits - to other members of the family or children
in the same class at school- have resulted. For example, the older brother
of two disabled children who gained access to school for the first time: leisure
activities organised for disabled children, which other neighbourhood children
also join in. Our long - term vision, however, is that disabled children would
be just one starting point to improving the lives of the whole community:
as government services become more responsive to families with disabled children,
so they become more responsive to people; by improving a school to facilitate
disabled children's learning, it can be improved for all children, and adapting
the physical environment to facilitate access to disabled children can also
benefit older people, mothers with young children, etc. We have a long way
to go, however, and one reason may be that 'work which concentrates on specific
populations(street children, disabled, ethnic minorities)...fails to address
causes whose roots lie outside the realm of these populations.'(Theis, p.9).
Nevertheless Ward 22 has shown that in a highly bureaucratic system such as
Vietnam, it is possible to develop a programme which is genuinely community
- based, and where it is the needs of children and their families which direct
the planning of activities. This is a step forward on the realisation of the
rights to access and community participation for children with disabilities.
Update
Since this article was written, the programme has expanded to 12 Wards &
Communes in 4 Districts of HCMC, with over 300 children included in the programme.
A ten-minute television documentary has been made about the Ward 21 programme,
and shown on Vietnamese television.
SCF is now taking a less direct role in training. Teams of resource people,
including more experienced volunteers, parents and disabled people, are being
supported by SCF to develop their training and facilitation skills, in order
to gradually take on more responsibility for training in the future.
The key issue now facing the programme is how to continue expansion to new
Communes, without losing the quality which comes from the community-based
problem-solving approach.
References
(1) - HCMC is divided into 18 Districs, which are sub-divided into Wards;
an average Ward population is 15-20,000.
(2) - 10,000 dong would buy 3-4 Kg of rice.
(3) - House registration document, without which people are not entitled to
health care, education or employment in that area.
Bibliography
Kristiansson, B. & Liljestrom, R.(1993) Report on Evaluation Mission
of CBR in Vietnam. Radda Barnen: Stockholm, Sweden.
Theis, J. (1996) Child - focused Development: An introduction . Briefing Paper
No.2, SEAPRO Documentation Series. Save the Children(UK) Southeast Asia and
the Pacific Regional Office: Bangkok, Thailand.
Tran, T.H.(1995) 'Linking with Primary Health Care Services: experiences from
Vietnam' in O'Toole, B. & McConkey, R. Innovations in Developing Countries
for People with Disabilities. Lisieux Hall: UK.
Selected Resources on CBR Services for Children
Newsletters
o ActionAid Disability News is the newsletter of the Disability Division
of ActionAid-INDIA. The newsletter is bi-annual and free upon request. Contact:
P.B. No. 5406, No.3. Rest House Road, Bangalore, 560 001 India.
Fax: 91 80 558 62 84; e-mail: co.clr@actionaid.sprintrpg.ems.vsnl.net.in
o African Journal of Special Needs Education is published bi-annually at the Uganda National Institute of Special Education. Contact: P.O. Box 6478, Kampala, Uganda; Fax: 256 41 222961.
o Asia Pacific Disability Rehabilitation Journal. This bi-annual journal covers theoretical and practical aspects of CBR in a wide range of contexts. Contact: Dr. Maya Thomas. Editor, J-124, Uahas Apartmente, 16th Main, IV Block, Jayanagar, Bangalore -560 011, Karnataka, India. Fax: 91 80 6638045.
o Asia & Pacific Journal on Disability is a bi-annual publication sponsored by the Asia and Pacific Regional Committee of Rehabilitation International (RI) and the Regional NGO Network (RNN). Contact: Karen Ngai, Executive Editor, City University of Hong Kong, Division of Social Studies, Tat Chee Avenue, Kowloon, Honk Kong. Fax: 852 2788 7709; e-mail: scngai@cityu.edu.hk
o CBR NEWS is published by the Appropriate Health Resources & Technology Action Group Ltd (AHRTAG). Three times a year in English, including braille and cassette versions. Also available in Hindi, "Indian English", Indian braille, and French. It is free to readers in developing countries. Contact: Farringdon Point, 29-35 Farringdon Road, London, EC1M 3JB, UK. Fax: 44 171 242 0041; e-mail: ahrtag@gn.apc.org; web site: http:// www.poptel.org.uk/ahrtag/
o FORWARD is the newsletter of COMBRA CBR Centre in Uganda. It includes information on CBR courses in the region and case studies about individuals who are part of the CBR projects. Contact: P.O. Box 708, Kampala, Uganda.
o Hopeful Steps CBR Newsletter is published by the Guyana CBR Programme.
It includes CBR information from the Guyana Region, particularly on training,
employment projects and resources. Contact: 120 Parade Street, Kingston, Georgetown,
Guyana.
Video Training Packages
o 3 D Project in Jamaica, under the direction of Dr. Molly Thornburn, has produced training manuals and videos on Parent Training, The Work Experience Project, Income Generating Projects, Stroke Rehabilitation for Community Workers, Teacher Orientation to Early Childhood Disability, Conducting Disability Surveys, Early Detection and Intervention in Childhood Disability, Assessments of Children with Disabilities, Orientation on Disability, Child Rearing Skills, Parent-to-Parent Counselling and Drama in Community Education. Contact: 3 D Projects, 14 Monk Street, Spanish Town, St. Catherine, Jamaica. Fax: 1 809 984 7808.
o Video Courses: A New Concept in Training Courses for Disability Services
in Africa is an eight part package that was videotaped in eight African locations.
Developed by Roy McConkey, Sarah Holloway and Liz Leo with partners in each
of the African countries, it illustrates how parents and communities members
can support the development of children with disabilities. A video programme
is also available on Moving On: Preparing African Teenagers with a disability
for Living in the Community. Contact: Penny Mharapara, Training Programme
Co-ordinator, P.O. Box 1198, Avondale, Harare, Zimbabwe.
o Hopeful Steps: Guyana Community Based Rehabilitation Programme is a video
training series which includes: 1. Hopeful Steps - six programmes examining
learning to move, talk, think and be independent; 2. Community Action on Disability
- eight programmes including parent/community involvement, working with teachers,
community networks and motivating volunteers; 3. Identification of Disabilities
- one video for Primary Health and CBR workers; 4. Facts for Life - one video
analysing the major challenges in developing health lives; 5. A New Tomorrow
- a series of eight programmes that examine the development of native Amerindian
people of Guyana; 6. Educating Communities About Disability - presents a series
of short puppet shows on attitudes toward disability; 7. When There is No
Nursery School - seven programmes offering ideas to parents and teachers for
stimulating the growth and development of the pre-school child; 8. Introducing
Children with Disabilities into Mainstream Schools - eight programmes on enrolling
children with disabilities into ordinary schools; 9. Step to Reading - six
programmes providing an introduction to reading; 10. CBR in the Rupununi,
Guyana - one video analysing CBR with native Amerindian people of Guyana;
11. Baha'I Community Health Partnership - one video tracing the development
of Primary Health Care in Guyana run by the Baha'I community. Many in the
series are accompanied by a manual. Contact: for NTSC copies, Dr. Brian O'Tool,
CBR Programme, EEC, P.O. Box 10847, Georgetown, Guyana. Fax: 592 2 62615;
for PAL copies, Dr. Roy McConkey, St. Aidans, Gattonside, Melrose, Roxburgshire,
Scotland, TD6 9NN, UK. Fax: 44 89 682 2159.
o Community Based Rehabilitation: Worldwide Applications is the title of
a new resource kit produced by Rehabilitation International with the generous
support of the Arab Gulf Programme for United Nations Development Organisations,
through the United Nations Voluntary Fund on Disability. The resource kit
consists of two parts: a) a video compilation of clips from outstanding CBR
films, concentrating on early intervention, integration and attitude change;
and
b) a 46 page booklet featuring a viewer's guide on how to use the video, a
series of vision statements by CBR specialists and practitioners, and a selected,
annotated bibliography of 80 books, periodicals, studies, and video training
packages on CBR implementation. The booklet is now available from RI, address
below, and copies of the video compilation will be available later this summer.
The project was researched and co-ordinated by Barbara Kolucki, consultant
in media & disability issues. Authors of vision statements about CBR included
disabled and non-disabled CBR specialists.
ONE IN TEN
Volume 18 - 1998
EDITOR
o Rosangela Berman-Bieler
email: rbbieler@aol.com
PROJECT SUPERVISION
o Gulbadan Habibi, Project Officer, Child Protection Section, UNICEF
email: ghabibi@unicef.org
o Susan Parker, Secretary General, RI
email: rehabintl@aol.com
UNICEF HOUSE
3 UN Plaza, New York, NY, 10017, USA, Fax: 1 (212) 824-6473
REHABILITATION INTERNATIONAL
25 East 21st Street, New York, NY 10010, USA, Fax: 1 (212) 505-0871