AN INNOVATIVE APPROACH TO ASSIST EARLY CHILDHOOD DEVELOPMENT FOR RURAL CHILDREN WITH DISABILITIES

INTRODUCTION

Appropriate stimulation in childhood ranks as one of the most important factors that influence childhood development. As a result, if a sensory perception is impaired, enhanced stimulation is required to compensate the handicap. However, what is frequently offered to the child with a disability is less stimulation rather than more. Hence any interruption of normal patterns of development in a child arising from disability is often more handicapping than the direct consequences of disability itself (1).

Bangladesh has been classified as one of the least developed countries by the United Nations and has very limited resources to spend on social services. It has one of the lowest per capita incomes in the world, amounting to US $ 240, compared to the regional average of US $ 345 and Swedish per capita income of US $ 23750. In Bangladesh, figures of prevalence vary widely in different studies, but is estimated that Bangladesh has approximately 9 million people with disabilities, of which the majority live in rural areas. However these are estimates and no reliable national surveys have been carried out in Bangladesh to ascertain the precise magnitude of the problem of disability.

Families living in rural Bangladesh have no access to services for children with disabilities, due to lack of facilities and lack of knowledge about early detection and rehabilitation. Assessment and education are delayed until the child is of school going age or older. Gender disparity also aggravates the situation, giving the girl child a double burden of being a girl, and having a disability. Thus there is a great need in Bangladesh for programmes that provide services of early identification and intervention, that reach out to children with disability living in rural and remote areas.

Different communities require different approaches to respond to the individual needs of stimulation for children with disabilities, and their families. This study illustrates a community based rehabilitation approach in urban and rural Bangladesh, which has gradually increased reach of educational services available to young children with disabilities.

METHODOLOGY

Bangladesh Protibondhi foundation (BPF), an organisation formed in 1984 in Dhaka, by a group of professionals and voluntary social workers has been a nodal agency carrying out an early childhood development programme in the urban and rural areas of Bangladesh. The main assumptions on which this programme was based, are that rehabilitation is most effective when disability is detected early and followed up by education and training as soon as possible, that the family is the most important care giving agency of a child with disability, and that using human resources, such as parents and community workers available at the community level, is the most cost-effective way of responding to the needs of these children.

In the villages involved in this programme, the community workers make home visits and screen the children for serious and moderate degrees of childhood disability using the ` Ten questions for rapid epidemiological assessment of childhood disability'(2). Positive cases are further assessed by BPF staff who visit the area from the urban centre. Depending on the individual need, the child is then enrolled in the educational programme. These programmes in the centre range from integrated primary education to Mother-Child-Stimulation (MCS), Distance Training Package Programme (DTPP), and adult literacy. Amongst these, the MCS is a centre based programme, while the DTPP is a family based programme.

In Bangladesh where there are no programmes for young children before entering primary school, the MCS is an innovative approach. The daily two hour programme provides a variety of development stimulation activities and rehabilitation, depending on the individual needs of the children. With the help of some simple toys such as balls, blocks and so on, the community worker teaches the mothers how they can stimulate the cognitive development of their children. Mothers actively participate in this programme, which also serves as an informal mother-to-mother support group. The aims of this programme are to improve the activities of daily life of the child and to make him as independent as possible. However, many families live too far away from the urban and rural centres, or face other difficulties in participating on a regular basis in the the MCS programme.

In order to increase coverage and to reach as many children living in rural areas as possible, BPF has developed the Distance Training Package Programme (DTPP). With DTPP, rehabilitation has been brought to the communities through a family based training programme.

In the initial stages the centre based therapists provided written instructions for the training. However, soon they realised that most parents who came for this training were non-literate and required materials that contained extensive illustrations. With the experience of providing the illustrated training packages, BPF developed a system of distance education for parents of children with disabilities who reside in the remote rural areas where services do not exist. Packages with minimal text and clear illustrations have been developed to explain the training techniques that have to be followed by the parents for their child's optimal physical, mental and social development. They are structured according to the developmental milestones and compiled into training guides, addressing different needs of the children at different times. The ideas and pictures have been adapted from different training materials that are available in the country. Initially three packages were developed according to the developmental milestones, that had incorporated exercises to enhance head control, balance while sitting and crawling, and standing and walking. The learning is disseminated in parts and the packages were given to the child according to his needs at that time. Manuals have now been developed for training in motor development, development of communication, training in cognitive and academic skills and social and self-help skills. For cognitive development the `Portage guide to early education' was adapted and made into a pictorial guide. Other pictorial guides were developed for training children with difficulties in feeding, using toilets, dressing, language and speech, and community adjustments. These manuals have also been field tested.

The training of parents is initially carried out at the urban centre at Dhaka. The severity of the disability, the family's awareness about the disability and the length of time the parents are able to stay at the centre, decides the duration of the training. Usually the training is of 2 to 5 days duration. Parents and staff work together to set a goal for each child, following which the appropriate manual is chosen to initiate the training. The parents are then shown how they should follow the pictorial and written instructions. In the initial stages they carry out the instruction under supervision. Parents are also provided with inexpensive locally made toys and other teaching aids made in the centre.

After this stage the parents return home and train their children at home for the next 2 to 3 months. After this period they return to the centre for the follow-up assessment and further instructions. BPF has now established one main rural centre for this purpose. In addition, the BPF staff visit 4 other areas every 2 to 3 months to carry out the DTPP programme, usually in the home of a disabled child or in a local school. The duration of the rehabilitation programme is thus highly flexible and depends on the needs of the individual child. Once the DTPP is completed the child is integrated into the regular school, as is done for those children who complete the MCS programme.

In the period between 1986 to 1996, the urban centre in Dhaka enrolled 1608 children between the age of few months to 10 years in the DTP programme. Between 1989 to 1996 two hundred children were also enrolled in the rural Dhamrai centre. About 15 % of the children enrolled in this rural centre dropped out of the programme before completion. The main reasons cited for drop out were that they lacked time or money to come to the centre, that they had unrealistic expectations which were not fulfilled, that their children had severe disability with little chance of any improvement and that it was difficult for the mother to travel to the centre with a disabled child without the help of any men-folk.

DISCUSSION

A study done by some BPF staff (3) shows that children provided with home based therapy by the mother, using the DTPP manuals, resulted in outcomes comparable to their peers who had attended special schools. However the approach also encounters some problems. Though the DTPP programme has enhanced the coverage of children who access rehabilitation programmes, their dropout rate has been a high 15%. A significant number of them dropout because of the distance between the centre and their homes. BPF has started to implement DTPP in other rural areas to overcome the difficulty travelling and long distances to some extent.

The DTPP programme has also shown that substantial number of children can be rehabilitated in their family and community setting without displacing them too much. It has shown that providing for early identification and training will, in the long run, give rise to better integration. Though unintended, the DTP programme has grouped together parents with similar problems, and has promoted collective participation from them. House 20, App. 404, Road 62, Gulshan, Dhaka, Bangladesh Ph: 880-2- 883506, email : heijnen@citechco.net

ACKNOWLEDGEMENT

The study was conducted by the author on behalf of Radda Barnen (Sedish SCF).

REFERENCES

1. Francis J. Review of the position of people with disability in Bangladesh. British High Commission, Dhaka, 1995.
2. Zaman SS, Khan NZ, Islam S, Durkin M. Report on Rapid Epidemiological Assessment of Childhood Disabilities in Bangladesh. Bangladesh Protibandhi Foundation, Dhaka, 1992.
3. Zaman SS (Ed). Scientific Studies on Developmental Disabilities in Bangladesh. Bangladesh Protibandhi Foundation, Dhaka, 1994.

Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 11 @ No. 1 @ 2000

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