Materials : Reference
DocumentsEconomic and Social Commission for Asia and the Pacific
Pathfinders:
Towards Full Participation and Equality of Persons with Disabilities in the ESCAP Region
Part 4 of 5 : Part 1 | Part
2 | Part 3 | Part 4 | Part 5
Social Policy Paper No. 2
PART FOUR
PREVENTION OF CAUSES OF DISABILITY AND REHABILITATION: COMMUNITY-BASED
REHABILITATION AND SOCIAL DEVELOPMENT
XII. OVERVIEW OF PREVENTION OF CAUSES OF DISABILITY AND REHABILITATION:
COMMUNITY-BASED REHABILITATION AND SOCIAL DEVELOPMENT
The primary focus of the ESCAP Decade of Action is the expansion of opportunities for
the full participation of people with disability in society - whether it be in their local
village, town, city or any of the other myriad of communities in this region. One way to
ensure this is through the strength and support of the members of those communities, both
disabled and non-disabled.
Community-based rehabilitation (CBR) is a strategy within community development for the
rehabilitation, equalization of opportunities and social integration of all people with
disabilities. CBR draws on the resources and efforts of people with disability, their
families, and their communities, as well as government agencies and non-governmental
organizations to improve the lives and opportunities of people with disability.
Too often, however, the resources available for CBR do not match the needs of those
with disability. The numbers of those with disability in the Asian and Pacific region are
extremely large. Due to the poor economic situation of many of the countries in this
region, only now rebuilding themselves after being ravaged by decades of war, these
numbers continue to grow. Accurate baseline data for people with disability is difficult
to collate, but perhaps in this instance it is not the best way to measure the
achievements. Through the stories of individuals such as Al-al and Lovely, who feature in
the next two case studies, we can better see the achievements of community-based
rehabilitation, and truly grasp the nature of that success.
Community-based efforts are an integral part of not just the rehabilitation of a person
with disability, but in many cases, in the prevention of disability itself. Unfortunately,
in the Asian and Pacific region prevention is a concept still in much need of development.
The second case study provides much to rejoice in, but the circumstances that led to
Lovely’s accident and eventual paralysis painfully highlights the often preventable
nature of injuries leading to disability.
XIII. COMMUNITY-BASED APPROACH TO EARLY INTERVENTION FOR CHILDREN WITH DISABILITIES:
THE KAMPI EXPERIENCE [19]
A. The nature of the problem
The Philippines is an archipelago of 7,107 islands with a population of 75.33 million.
At least 70 per cent of the country is rural and engaged in agriculture. The
socio-economic situation is characterized by conditions of poverty and underdevelopment,
manifested in low levels of family income and quality of life. Social services are
inadequate for many sectors in society. In many parts of the country, people do not have
access to basic services, including health care. This is particularly true for remote
rural areas with inadequate transport. Services are more readily available in urban areas,
but cost may prevent access for poorer families.
Conditions faced by people with disabilities are even more severe. They experience
worse conditions of poverty as a result of physical, cultural and social constraints. They
are often subjected to discrimination, rejection, isolation and general lack of concern
from nondisabled members of their communities, and are excluded from mainstream
development. Access to education, employment and other activities in society is limited
and, in many cases, unavailable to people with disabilities. Although there is no accurate
system for determining the number of people with disabilities in the Philippines, using
World Health Organization estimates, the number is approximately 7.5 million. Based on
data obtained from the National Statistics Office that suggest that children make up 42
per cent of the total population, an estimate of 3 million children with disabilities may
not be unrealistic. Many disabled adults who lead underdeveloped and unproductive lives
have been denied access to rehabilitation, education, health care and other necessary
services in their early lives.
Rehabilitation, including early intervention, is crucial for children with disabilities
if they are to have an opportunity to achieve equal participation in all aspects of
community life. It is through early identification and provision of appropriate early
intervention services that rehabilitation initiatives can be most effective. Providing
rehabilitation to a disabled child at the earliest possible age has the greatest impact on
the future development of that child.
The Standard Rules on the Equalization of Opportunities for Persons with Disabilities [20] states that Governments should ensure the provision of
rehabilitation services to persons with disabilities in order for them to reach and
sustain their optimum level of independence and functioning. The commitment of the
Government of the Philippines to the equalization of opportunities and the integration of
persons with disabilities is embodied in the anti-discrimination disability legislation
known as the Magna Carta for Disabled Persons. The legislation is comprehensive but not
fully implemented. Under the legislation, the Department of Health, working with the
National Council for the Welfare of Disabled Persons, an inter-agency body, is responsible
for the rehabilitation programme of the Government. This included the provision of
physical rehabilitation to remove the limitations and barriers that prevent people with
disabilities from full participation in community life.
To achieve this aim, the Department of Health adopted a strategy of community-based
rehabilitation (CBR). This has grown from a few pilot projects in 1992 to more than 100
programmes in 2001. The National Council for the Welfare of Disabled Persons (NCWDP) has
also established a ten-year comprehensive CBR demonstration programme in a city of Metro
Manila. It was intended that this CBR model would cater for all types of disabilities and
would include all the components of rehabilitation perceived to be necessary in fully
addressing the rehabilitation needs of persons with disabilities. Unfortunately, the
outcome has not lived up to the early expectations. Lack of adequate funding has resulted
in inadequate facilities, outdated equipment, poor quality treatment and, above all,
inadequately trained professional human resources.
A further problem is the fact that the majority of persons with disabilities belong to
low-income families, whose most urgent priority is to provide food and other basic needs.
The needs of a child with disability are a low priority. Families are also faced with
negative attitudes within their communities. There is a stigma attached to having a child
with disability. The family may be over-protective in their attempt to protect the child
from ridicule, or the child may be abandoned. Many parents do not know that there are
appropriate interventions that can improve the functioning, well-being and social
acceptability of a disabled child.
The importance of the role of the family is acknowledged in the Standard Rules on the
Equalization of Opportunities for Persons with Disabilities, but the Magna Carta
disability legislation has no specific provision concerning the role of the family in the
rehabilitation process. For rehabilitation to be effective and comprehensive, particularly
where children are concerned, it must address the social context of the child, and involve
the family and community structures which form the child’s context, rather than
focusing purely on medical intervention. Crucial components that could facilitate the
integration of the child in the family and the community, through teaching the family
members how to deal with the disability and facilitate the maximum development of their
own child, are missing from many of the government rehabilitation programmes.
B. The nature of the project
The Katipunan ng Maykapansanan sa Pilipinas Incorporated (KAMPI) is an organization for
disabled persons in the Philippines, and has worked in many areas to improve the situation
of disabled people, to uphold their rights, and ensure their access to appropriate and
necessary services. The situation of children with disabilities was of concern to KAMPI,
who were fully aware of the great need to provide comprehensive and sustainable
rehabilitation services to improve the lives of these children. In response to this need,
KAMPI has embarked on projects to develop models of rehabilitation services for children
with disabilities that are effective, low cost, sustainable, replicable, and reflect good
practices and concepts. In 1995 KAMPI formed a partnership with the Danish Society of
Polio and Accident victims. The initial project was termed “Breaking Barriers -
Philippines” (1995-1999). This was followed by a second project entitled
“Breaking Barriers for Children (1999-2003).
The objective of the projects was to make available free comprehensive rehabilitation
services to marginalized children with disabilities from birth to 14 years. This was
achieved by strategically establishing Stimulation and Therapeutic Activity Centres (STAC)
in five regions of the Philippines archipelago.
The STACs are facilities where children with either physical and/or mental disabilities
can receive free comprehensive rehabilitation and other services. Children are enlisted
into the project through direct action from the family, or through information provided by
the Social Welfare Department, local government or rural health units or social workers
who have identified children with disabilities needing rehabilitation and other services.
The centres, which are often the only facility of their kind in most areas where they have
been set up, currently serve some 5,700 children with disabilities.
Each centre is equipped with treatment accessories, rehabilitation aids and training
accessories for different types of disabilities. Personnel include physical therapists,
occupational therapists, physiatrists, special education coordinators and rehabilitation
students.
The STAC serves as a workshop and an activity centre for the physical, social and
psychological development of the disabled child. Treatment sessions are mixed with indoor
and outdoor stimulation and activities designed to maximize the attention span of the
children.
1. The process
A primary consideration in accepting a child for rehabilitation is the socio-economic
condition of the family. Social workers assess the status of the family and individual
members by interviewing the parents or key informants in the community. The project is
offered to children whose family is considered to be suffering economic hardships that
limit their ability to access rehabilitation and other services.
Once a child is considered a suitable beneficiary for the project, an evaluation
process by rehabilitation specialists along with physical and occupational therapists
takes place. The evaluation is the basis for planning the treatment of the child. The
purpose of evaluation and process of planning treatment is explained to the parents who
will themselves become part of the process.
There are two main components used by KAMPI in treating children with disability –
physical rehabilitation and social rehabilitation. Physical rehabilitation and stimulation
are provided to the children as needed. Activities to prepare school-aged children for
education are conducted by the occupational therapist and the special education
coordinator. In some cases where the centre does not provide the appropriate services, for
example for speech therapy and medical or surgical procedures, children are referred to
other facilities outside the project. When needed, the project provides assistive devices
such as wheelchairs, crutches, hearing aids, and braces to STAC clients.
Social integration is very important in the rehabilitation of a child with disability
and as such it is a central component of KAMPI’s Breaking Barriers for Children (BBC)
project. Through this project opportunities for socialization and free play are created
for severely disabled children. Occupational therapists and special education coordinators
facilitate the sessions using programme activities that develop and enhance the
child’s opportunities to socialize and perform simple activities for daily living and
their capability to engage in indoor and outdoor play.
In addition to the services provided to the child, much of the social rehabilitation is
done in counseling sessions which enable 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.
Disability has always had negative associations. Prevalent in many families is the
perception that a child with a disability is a liability. This comes from a lack of
awareness of the benefits of stimulation and therapy that can allow a disabled child to
gain some independence in their day-to-day activities. The counseling services are
designed to eliminate or minimize these misconceptions that can impede the well-being and
rehabilitation of children with disabilities.
Children with disabilities must be properly nurtured so that they may achieve their
full potential. Most often it is the parents who hold the sometimes difficult and
challenging responsibility of bringing up their disabled child. To assist parents in their
role, project social workers conduct discussions on responsible parenthood, and help when
needed in teaching good child rearing practices and parenting skills.
Figure 11. Quezon City - licensed physical therapist supervises interns
in the management of therapy for children with disabilities, with their parents at their
side.
Family therapy counseling sessions are conducted to reduce stressful situations that
may come about as a result of family disputes related to the difficulty of bringing up a
child with special needs. The counseling sessions also encourage the growth of positive
values by conducting awareness raising sessions with family members. When the targeted
family members internalize more positive values it results in a better relationship
between the child with disability and the family member(s), greatly enhancing the
rehabilitation of the child.
2. Services for non-disabled siblings
In some cases the presence of a disabled child in a family can have a negative effect
on the schooling of non-disabled siblings. In families with very little or almost no
resources at all, non-disabled children sometimes lose motivation to attend school or are
forced to drop out so that meagre family resources can be used to meet the needs of the
child with disability. Just as the project is able to provide support for the schooling of
disabled children, project social workers also assist siblings of disabled children in
linking them up with education authorities who are able to provide assistance in providing
education counseling, assessment and identifying more appropriate education placement for
the sibling. In addition the project is able to provide some financial subsidies for
tuition and other school fees, school supplies and the like.
3. Parents’ involvement in school and other activities
As part of the effort to build the self-esteem of disabled children and their families,
opportunities are created to widen the scope of their knowledge and experience by bringing
them together and introducing them to places of interest where they can spend time
together and enjoy each other’s company. One of the most favoured places for this
sort of activity is the beach. Children can play in the sun and at the same time undergo
hydrotherapy conducted by their parents under the supervision of physical therapists.
Other destinations for similar trips include visits to malls and public parks.
One such outing that has now become a tradition is the yearly STAC Christmas party for
children and their families. During this occasion, parents and children with disabilities
become closer to one another as they share food, exchange gifts, put on presentations and
play games. Other much-enjoyed events are the Sports Festivals, such as the annual
Abilities Olympics (Abilympics) held by the centres. Activities like the Abilympics serve
to boost the morale of the children and offer them an opportunity to display their
abilities in sport, and likewise enable the parents to witness the extraordinary abilities
of their children.
C. Achievements
The localization of rehabilitation services and their sustainability, especially in
remote areas, is an achievement for the project. Five main STACs have been established in
strategic cities and towns. However, many clients reside in remote localities called
“barangays”. Parents in these remote localities are burdened with expensive and
inaccessible transport means. In order to address the needs of these children and their
families and to make the rehabilitation services more accessible, a total of 49 [21] satellite rehabilitation centres have been set up in barangays
nearer to places where a significant number of children with disabilities reside.
In these communities, local health units have volunteers called barangay health workers
who serve as assistants to health professionals. Selected barangay health workers from
satellite STACs have also been trained on the identification and rehabilitation of
disabled children. The training included awareness raising on different disabilities,
specific rehabilitation techniques and hands-on training. Hands-on training where barangay
health wokers perform rehabilitation exercises on the children is supervised by the
project physical therapists.
The satellite STAC functions in the same way as the main STACs do but they are usually
located in smaller spaces and have basic rehabilitation equipment and accessories for
treatment. At the start children who use these satellite centres are required to go
through the main STAC for evaluation and initial treatment. After treatment plans have
been formulated, the children receive therapy in the satellite centre at least once a
week.
These achievements in developing the reach and sustainability of the STACs have a human
face as well, in the personal achievements of the children and their families that make
use of their local centre’s resources.
D. Key lessons learned
The success of the STAC is not only in providing rehabilitation to children with
disabilities, but also in the rehabilitation of their families. KAMPI hopes to further
pursue and realize its members’ collective goal of building better lives for disabled
children and people with disabilities in general.
E. Sustainability
As disabled persons themselves, the leadership of KAMPI wants to ensure the
sustainability of their efforts. This can only be achieved through a close partnership
with government. The main and satellite STACs will not and cannot be sustained by the
Breaking Barriers for Children project beyond 2003. But the need for free rehabilitation
services for children with disabilities will remain. In anticipation of the need for
sustainable provision of services, specific measures have been undertaken.
In establishing the centres, project staff have advocated for the importance of
developing children with disabilities and have lobbied local government officials, health
and social welfare agencies to open centres in their areas. From the start it has been
made clear that after the project ends the facilities cannot be sustained unless local
government takes over the operations.
In everything KAMPI does, it always makes sure the Government is involved. In all areas
where there are STACs, Government must contribute, no matter how meagre the resource is
(in cash or in kind), to help run the project.
The existing STACs are mostly located in government buildings or facilities of
nongovernment partners who have the capacity to take over the operation of the centre
after the end of the project. To date [22] operations of two
of the main centres and twelve satellite centres have been turned over to local government
units and non-government partners. The respective partners have hired physical therapists
in the satellite centres and the barangay health workers continue to assist in the
rehabilitation process.
Everything is being done to ensure that when the time comes for KAMPI to phase out its
involvement the local government partners will continue to provide services started
through the KAMPI initiative.
Fighter’s Victory: Success story of a STAC client Alfie John
"Al-al" Gregori
The first battle of Al-al, as he was fondly called, began when he was barely minutes
old. He turned pale and stopped breathing for three minutes. His parents had conceded
defeat; in fact, Rodel, his father had prepared a burial place for him. But he fought to
keep his life. When he manifested a barely visible sign of life with the gentle movement
of his hand, his father resuscitated him. And live, he did.
The jubilation for the renewed life of Al-al did not last long. Five days after his
first ordeal with death came another battle. This time, he turned yellow and his umbilicus
was wrapped with pus. He was brought to the hospital where he won once again. But the
victory was not without repercussion. It left him with a disability - cerebral palsy.
That began another round of battle for Al-al. He battled against the jerky and
uncoordinated body movements. He battled against the delayed development of his motor
skills. The biggest challenge was coping with activities of daily living such as sitting,
standing, eating, dressing-up and other activities that ordinary kids normally learn to
do.
Al-al could have remained like this had it not been for the rehabilitation he received
at STAC Iloilo in August 1996. STAC Iloilo equipped Al-al with the necessary tools he
needed for his journey on the long road to rehabilitation. The physical therapy sessions
at STAC Iloilo encouraged Al-al to participate in the exercises and treatment. Al-al's
mother, Miriam, together with a younger brother, religiously brought Al-al to STAC. She
complemented the therapy sessions with home exercises learnt at STAC. The active
involvement of Al-al's mother accelerated his rehabilitation. Moreover, his disability did
not impede his social growth. Al-al actively joined the Mall Tour, Beach Party, Christmas
Party, Medical Missions and other social activities of STAC Iloilo. With the rate he was
progressing, it seemed that he was winning the battle.
Two years of rehabilitation saw remarkable progress in the physical capability of
Al-al. From little muscular control or support, he is now able to sit, stand and walk with
the assistance of bilateral long braces. His progress in the span of two years merited the
attention of the press. In May 1999, the leading daily newspaper Philippine Daily
Inquirer, featured an article on him, describing not only his victory but the contribution
to this made by the physical therapy sessions at STAC. The article also described how the
occupational therapy sessions fostered his mental faculties and how socialization with
other children became one of Al-al's tools ensuring his success.
In August 1999, the Panay News also ran a story describing the exceptional feat of
Al-al and other children assisted at STAC. AL-al's victory was broadcast nationwide in a
popular TV program-Balitang K.
With a little more rehabilitation, Al-al was able to discard his braces and walk
independently. He can also dress himself without much difficulty. And to the delight of
his mother, he can even help with the household chores! His first step towards integration
into the mainstream occurred with his inclusion in the Day Care Center in their barangay.
His mother's determined spirit and his own perseverance will bring him to a regular school
in the coming school year.
Bringing children with disabilities for integration in a regular school will be another
battle that STAC is hoping to win. It would be a national victory for KAMPI and PTU, the
prime provider of resources to STAC. For Al-al it would be another personal victory.
Figure 12. The Fighter: Al-al – radiant in his victory against
disability
XIV. LOVELY’S STORY: A CASE STUDY FROM THE CENTRE FOR THE REHABILITATION OF THE
PARALYSED IN BANGLADESH [23]
A. The nature of the problem
Before her accident Lovely went to school and was in class two. Her family was very
poor and at a very young age she saw the harsh face of poverty. Her father was a farmer
and her mother a housewife. The family lived in a very simple dwelling - a house made of
jute canes with a corrugated iron roof. They had only a small piece of land and the crops
that it was able to grow weren’t enough to support a family of six members. So
Lovely’s father had to work on other people’s farms to earn extra money to make
ends meet.
When Lovely was offered a job as a maid in a landlady’s house, she immediately
accepted it even though she was only nine years old and still at school. As the landlady
lived in town, Lovely had to move far away from her family.
One day while Lovely was hanging the washing out on the roof of her landlady’s
house she slipped and fell, breaking her neck. She was taken to the local hospital by a
tempo (a vehicle used to carry up to 12 passengers) and spent about 15 days in the
hospital. Unfortunately, the doctors didn’t know how to manage Lovely’s
condition as they had never received any training on how to treat patients with paralysis.
However, just before she was to be discharged one of her relatives who lives in Dhaka
heard about the Centre for the Rehabilitation of the Paralysed (CRP) and suggested Lovely
should be sent to CRP without delay. Following this advice, Lovely’s parents took her
to Savar, the village where CRP is, in a public bus. From the bus stop she then travelled
on a flat bed rickshaw van. Finally, over two weeks after her accident, Lovely was
admitted to CRP in December 1995.
Bangladesh became independent in 1971 and like many countries throughout the region,
the brutality of their war for Independence left many people disabled. According to the
World Health Organization (WHO) approximately 10 per cent of the total population is
disabled, about 12 million people. During the war there were no available treatment or
rehabilitation facilities. There were also very few trained specialists, such as
physiotherapists or occupational therapists. Although the Government of Bangladesh has
made significant improvements in some health sectors, for example reduction of fertility
rates, the use of Oral Re-hydration Solution (ORS) and reduction of the child mortality
rate, there has been no significant improvement in the disability sector.
Paralysis, like other disabilities in Bangladesh, is increasing. Owing to lack of
services, paralysed people have become the most underprivileged section of the population.
Approximately 50 per cent of the total population live below the poverty line. There is no
adequate health care system in Bangladesh and there is no such thing as social welfare.
People with paralysis have limited opportunities for medical, economic and social
rehabilitation. These conditions impede efforts to ensure equalization, full participation
and empowerment of paralysed people in Bangladesh.
The attitude of the general public regarding disability also works as another
impediment towards the social integration of disabled people into the community.
Disability has been stigmatized in Bangladesh. Lack of education, awareness and
understanding of disability are some of the reasons that people hold negative attitudes
towards disability.
Women with disabilities are the most underprivileged group among this already poorly
serviced section of society. They are deprived of many of the basic human necessities.
Women in general are considered to be second-class citizens in Bangladesh, when a woman
becomes paralysed she loses even that social status. Many women are deserted by their
husbands following their disability. As a result some women are forced to return to their
parents’ house, where even there, her basic needs are often ignored or unable to be
met by the family members. Therefore, while women in other parts of the world are trying
to achieve equal opportunities with men, women with disabilities in Bangladesh are
struggling just to prove themselves as human beings.
B. Main features of the organization
While there are some NGOs and self-help organizations working in Bangladesh for people
with disabilities, there are hardly any specialized organizations working for the
treatment, empowerment and social integration of people with paralysis. The Centre for the
Rehabilitation of the Paralysed (CRP) is one of the few.
The CRP hospital provides rehabilitation services to patients through a
multi-disciplinary team. The team comprises doctors, nurses, physiotherapists,
occupational therapists, social workers, counselors and ancillary staff. Other
interventions pertaining to health care include pathological tests, x-rays, surgical
operations and telemedicine (which links CRP with consultants overseas).
A holistic approach is adopted to ensure that patients receive the required medical,
nursing and therapy inputs. The patients’ future following discharge is also
addressed by CRP, with particular attention paid to their physical, economic, vocational,
social and psychological condition through the Social Welfare and Occupational Therapy
Department.
1. Rehabilitation Services – Institution Based
(a) Medical and nursing care
CRP provides specialized medical care in its 100-bed hospital to patients with spinal
cord injury and children with disabilities. Medical and nursing care are provided
throughout the patient’s stay ensuring that the patient is prepared for discharge,
with the ability to manage bladder, bowel and skin care. Specific health education is also
provided to the patient and their carers from the time of admission right through to
discharge. Health education is important in helping the patient to come to terms with
his/her disability. It is also important in preparing the patient for discharge by
providing knowledge about the prevention of further complications.
(b) Occupational therapy services
Occupational therapy is the treatment of physical and psychiatric conditions through
specifically selected and graded activities. The Occupational Therapy Department is
engaged in assessment and treatment of disabled people to assist them in reaching their
maximum level of function in all aspects of daily life. Occupational therapists focus on a
person’s roles to help direct and prioritize treatment. Support and education are an
integral part of the recovery process, aiding not only physical well-being but also social
well-being. Patients’ aspirations are taken into account when a treatment plan is
drawn up. Areas that are addressed in this regard include those documented below.
• Physiotherapy – The treatment regime includes therapeutic exercises;
movement re-education; respiratory exercises and training in the use of mobility aids. All
inpatients are assigned a physiotherapist and a daily physiotherapy service for
outpatients is also provided at CRP-Savar.
• Motivation and counselling - Paralysis is stigmatized still in Bangladesh
and patients who are admitted to CRP with spinal cord injuries have to come to terms with
their altered mobility. For very many, the reality is that they may never walk again, and
as a result the onset of physical disability is often accompanied by psychological
breakdown. CRP believes in a holistic approach towards its clients’ rehabilitation
and provides counselling to aid emotional rehabilitation. Two staff members, one of whom
is disabled (paralysed from the waist down) play a vital role in the counseling and
motivation of patients. The disabled staff member herself provides an excellent example to
patients who need her help.
• Mobility aids and appliances - CRP produces a wide range of mobility aids
and appliances such as wheelchairs, crutches, low-level trolleys, braces, calipers, and
skull traction equipment on the basis of the Centre’s needs. In addition to
fulfilling the needs of the Centre, mobility aids are supplied to different NGOs who are
working for disabled people and other individuals requiring this equipment.
• Vocational training - Owing to the nature of their injuries, many
patients discharged from CRP are unable to return to their previous occupations. CRP
realizes the importance of equipping disabled persons with the necessary skills to enable
them to return to their communities - not as a burden, but as individuals with the ability
to provide for themselves and their families. Types of vocational training include
electronics, computing, handicraft production, picture framing, tailoring, shop
management, general education and shoe making (CRP patients have a contract with Apex and
Bata shoe companies).
(c) Advocacy and networking
CRP strives to strengthen the human rights of disabled people by improving their
quality of life and encouraging communities, non-governmental organizations and aid
agencies to include disabled people in their existing programmes. Furthermore CRP aims to
influence the government by advocating:
• The Ministry of Health to create posts for therapists in government hospitals;
• The Ministry of Education to encourage the inclusion of children with
disabilities in mainstream schools;
• The Ministry of Social Welfare to include services for disabled people in their
development programme.
Awareness raising on disability issues is a key strategy. Changing negative attitudes
towards disabled people and increasing their opportunities for integration and involvement
in the community is addressed through film, videos and publications. CRP has also forged
recent links with Ain o Salish Kendro (ASK), an organization that educates women of their
rights under Bangladesh law.
2. Community-based rehabilitation (CBR) services
It is essential to gain the commitment, support and involvement of local communities,
and to receive input from community leaders, local groups of disabled people, community
workers, other organizations and individuals working at community level. CRP has been
involved in a community-based rehabilitation (CBR) programme since 1994. Through the CBR
programme, Thana Action Group Implementation Committees (TAGICs) have been formed.
Representatives of the TAGICs include the Thana Nirbahi Officer, Thana Social Service
Officer (TSSO), religious and community leaders, disabled community members, a CRP
representative and representatives from NGOs working in the area. This body is responsible
for the day-to-day management of the CBR programme. The CBR programme focuses on
prevention of disability, raising awareness and improving the physical environment for
disabled people. It also provides referral services, vocational training and micro-credit
programmes, and develops employment and educational opportunities for disabled people.
The CBR programme is implemented through the combined efforts of disabled people
themselves, their families and communities and the appropriate health, education,
vocational and social services. At present the programme is established in 42 thanas of 6
districts, namely Savar Thana of Dhaka, Tangail, Gazipur, Mymensingh, Narayanganj and
Moulvibazar. Approximately 2,000 people receive services each month in these areas.
CRP’s plan is that eventually the programme will spread to all districts of
Bangladesh. CRP will continue to support CBR activities by providing advocacy; technical
support including mobile clinics and specialized rehabilitation; follow-up; and training,
monitoring and evaluation of community-based activities.
3. Community based rehabilitation (CBR) workers
CBR workers are people who have shown an interest in community work and are selected by
Thana Action Group Implementation Committees (TAGICs) to carry out the work of the CBR
programme. All CBR workers are volunteers who receive training from CRP and who work 6 to
8 hours per week providing services for disabled people.
Gonokbari, a sub-centre of CRP, was set up to provide vocational training and
income generation schemes for disabled women who are destitute, abandoned by their
families or have nowhere else to go. There is a residential hostel here, which
accommodates up to 28 women.
CRP-Gonokbari aims to:
• Ensure that disabled women develop living skills, receive vocational training,
have access to further education and are able to participate in income generating
activities;
• Provide a safe and secure environment in which disabled women can live and
develop confidence to work independently in the community;
• Help disabled women integrate into the workplace alongside non-disabled people;
• Raise the status of disabled women in the community by enabling them to become
more visible and active, both socially and economically.
4. Accessibility
CRP has lobbied the Government to make buildings and places more accessible to disabled
people and has been instrumental in having ramps introduced at various locations. CRP has
also lobbied the Government to introduce legislation on the National Building Code and
this legislation is now being reviewed. CRP produced an accessibility manual that the
Department of Engineering has bought to distribute to more than 500 of its engineers.
C. Achievements
The situation for paralysed people in Bangladesh is such that achievements such as
CRP’s are often lost in comparison with the sheer number of people with disabilities.
The only real way to appreciate the achievements of the centre is through the individual
stories of triumph such as Lovely’s.
For nine-year-old Lovely at first it was very hard to come to terms with suddenly being
paralysed from the neck down. One of CRP’s first jobs was to provide Lovely with
counselling to help with her emotional rehabilitation and to prepare her for all the
activities at CRP that would assist her to meet the challenges ahead as she adjusted to
her new life.
CRP provided Lovely with health education as part of her rehabilitation programme. This
included how to manage her bowel and bladder. Since Lovely needed a carer to help her, she
too was included in this health education programme. Paralysed patients in Bangladesh very
often suffer from pressure sores. Lovely and her carer were trained on how to avoid
developing pressure sores as part of their health education. Lovely’s carer was also
taught how to give chest therapy, as it is important in treating chest infections commonly
experienced by people paralysed from the neck down.
After one and a half months of bed rest Lovely was able to get out of the bed and sit
in a wheelchair. This enabled her to move around and take part in different kinds of
activities that form part of her rehabilitation programme. It was during this time that
Lovely began to learn that life doesn’t end because of a physical disability. She
developed a taste for painting and sought help from CRP’s occupational therapists
regarding this. The therapists working with Lovely came up with ideas to help fulfil her
wish. Since Lovely was paralysed from her neck down they encouraged her to paint with her
mouth. They made a special splint so she could hold a paintbrush with her mouth.
At first she was not very happy with the quality of her pictures, but soon her talent
for painting was discovered. CRP recognized Lovely would benefit from the expertise of an
art teacher. One of CRP’s volunteers contacted the Association of Mouth and Foot
Painting Artists (AMFPA) and persuaded them to sponsor an art teacher for Lovely. AMFPA
agreed to provide funding not only for Lovely’s art teacher, but also for art
equipment. Their only condition was that Lovely would send at least two pictures to them
every year to show them the improvement in her work. Meanwhile CRP printed some of
Lovely’s paintings as greetings cards and calendars and started marketing them as
well. CRP takes a small percentage of the profit from sales and opened a bank account for
Lovely where the rest of the money is saved. More cards have since been printed and are
being sold at home and abroad.
Figure 13. Lovely practices her painting, Savar, Dhaka
When Lovely’s physical and clinical rehabilitation was completed, CRP began to
prepare her to be discharged from the Centre. She was unable to return to her family
because they were not able to support her financially, therefore in order to continue her
vocational training, the CRP team decided to move her to their Women’s Project at
Gonokbari.
In March 1998 (three years after sustaining her injury) Lovely moved to Gonokbari to
live outside the hospital as a tetraplegic (paralysed from the neck down) individual for
the first time. Lovely coped with the new environment very well. Every day she improved
her skills in painting with the help of her art teacher. The money that Lovely received
from the sale of her cards though was not enough to support herself and her carer. When
she started her schooling, for example, she needed money for tuition fees, books, private
tutor, etc. CRP sought help for Lovely to cover this cost. As a result Stichting Liliane
Fonds (SLF), a Netherlands based organization offered to help. SLF works with disabled
children in developing countries by providing personalized, small-scale, direct funding.
While residing at Gonokbari, Lovely wanted to return to school and continue her
studies. Social workers and the community-based rehabilitation workers of CRP contacted
local community and religious leaders and the school authorities and persuaded them to
allow Lovely to be integrated into the local school. CRP used its community network to
help make the journey to school easier for Lovely, and with the help of local people they
were able to improve the accessibility of the school entrance. At the beginning of 1999
Lovely started her formal education again after more than three years away. She once again
proved her talent and determination by passing all her exams successfully. Initially she
needed a writer during exams, but she soon mastered writing with her mouth and now attends
all exams without a writer.
Lovely continues to save money from the sale of her cards. In addition, with the income
from the sale of cards, Lovely herself is able to pay for the salary of her personal
carer. The Association of Mouth and Foot Painting Artists continues to pay for her art
lessons and Stichting Liliane Fonds continues to support her residential costs at
Gonokbari. However, from January 2001, the amount of funding requested from SLF was
decreased as Lovely’s own ability to take responsibility for some of her personal
expenses has increased.
Lovely did not stop at receiving help from others, she also showed a great deal of
potential in helping others as well. Lovely herself was a child labourer and was familiar
with the harsh and unforgiving reality those children are plunged into. Therefore, in 1999
Lovely joined the Youth Leadership Forum in Dhaka, organized by UNICEF. In this workshop,
Lovely represented all the disabled children at CRP, but she knew her purpose should be
twofold: (1) to help other participants understand and to recognize the barriers faced by
disabled children and the dangers of stereotyping disabled children; and (2) to raise
awareness of the terrible plight of child labourers.
While she was growing in confidence in her new role as a spokesperson for children,
Lovely’s artistic skills also continued to improve and her fame has spread. She is
the only mouth painter in the whole of Bangladesh. She has become well known to people
locally as she has done a number of television interviews. Her success story fascinates
many and gives hope to other people with disabilities in Bangladesh.
Lovely learned not to give up ever. With CRP’s help and cooperation, together with
her own perseverance, Lovely has been able to overcome the barriers that could have
stopped her from realizing her full potential, and she continues to live as a shining
example for others with disabilities.
D. Key lessons learned
The importance of the CBR/social workers in enhancing and promoting the process of
social integration of disabled people was demonstrated during Lovely’s
rehabilitation. CRP also learnt that although many hold unfavourable attitudes towards
disability, these attitudes can be changed, provided a sustained national campaign is
organized to increase understanding and awareness of disability.
Inter-organizational rapport among disability-concerned organizations also has an
important role to play in the successful reintegration of paralysed persons into the
community. Holistic rehabilitation, that is physical, emotional, social and economic
rehabilitation, can be assured only when this rapport is successfully built up.
In a country where one third of the population lives below the poverty line, economic
rehabilitation plays an important part in the overall rehabilitation of a patient. A
person with paralysis can make her voice heard and display her potential to others only
when she is able to be economically independent. The case study of Lovely shows that even
the most neglected and disadvantaged social group can achieve their potential provided
they have equal opportunities for full participation in all sections of society.
E. Sustainability
For the sustainability of its mission, CRP will continue to promote quality health care
and rehabilitation for disabled people, focusing on awareness raising of disability
issues, promotion of equal opportunities, development of skilled personnel and prevention
of disability. CRP is the only centre of its kind in Bangladesh and as a result it covers
the entire country. CRP’s long-term plan is to develop similar centres in other
divisions of the country, but this plan will depend on the results of a detailed
feasibility study focusing on financial ability, availability of trained staff, perceived
needs, potential beneficiaries, and the interest and ability of the Government of
Bangladesh and NGOs to take on this responsibility solely or in partnership with CRP.
Much of CRP’s equipment, such as furniture and mobility aids, is made on site in
its own workshops, thus there is ample capacity for maintenance and upkeep of much of the
equipment.
For financial sustainability CRP aims to increase its income-generating activities
(which incorporate employment creation for paralysed persons) and further an endowment
scheme enabling CRP to become as self-supporting as possible. A local “Friends”
group has been established with the aim of raising funds.
While income-generation is a high priority for CRP in all of its projects, the centre
mainly serves disabled people from the poorest sections of society, at or below the
poverty level (75 per cent of patients are in this category). Thus, much of its service is
free or at minimal cost. It will therefore need support from outside for a considerable
time to come. However, as outlined in CRP’s Strategic Plan, the centre aims to
decrease the amount of international donor support by 15 per cent over the next three
years, while increasing its own income generation and increasing local support.
CRP’s founder, Ms Valerie Taylor, acts as its main fundraiser and has successfully
raised funds for the Centre with the support of Friends of CRP (FCRP-UK). The Government
of Bangladesh is now also beginning to support the work of CRP. In 1999, for the first
time the equivalent of one month’s running costs was provided by the Government and
CRP is hopeful of their continued support.
NOTES
19 Based on a paper prepared by Venus Ilagen, Chairperson,
Disabled Peoples’ International, Asia-Pacific Region, and President of KAMPI.
20 http://www.un.org/esa/socdev/enable/dissre00.htm
21 Figure as of 20 March 2001. In the future 60 satellites
will be established.
22 As of 20 March, 2001
23 Based on a paper prepared by the Centre for the
Rehabilitation of the Paralysed, Savar, Dhaka, Bangladesh
24 Based on a paper prepared by Duong Thi Van, Chairperson,
Bright Future Group for People with Disabilities, Hanoi, Viet Nam.
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