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INTEGRATION OF CHILDREN WITH MULTIPLE DISABILITY IN COMMUNITIES


Vimal Thawani


Project Manager

Blind People’s Association

Vastrapur, Ahmedabad – 380015

11th ICEVI World Conference

Leewenhorst Congress Centre

Noordwikerhout, The Netherlands

31st July, 2002

Two roads diverged in a wood

and I took the one less trodden  by…

(Robert Frost)

1. Existing Scenario

I represent the developing world that accounts for a large majority of the world’s disabled population. No institutional programmes can ever reach out or serve such a large population.

The concept of specialized services to children with multiple disabilities is relatively new and I am sure this may be true for most developing countries. The few services which you can count on your finger tips are located mostly in urban areas and can accommodate at the most a few hundred children.  Services to young babies (0 – 6 years) are hardly available at present. Apart from non availability of services, there are a number of areas of concern as regard integration of such children, namely,

·       A large population in the developing countries lives in remote rural areas where even the basic health and education services are scare. 

·       While the services for such children with multiple disabilities are almost non-existent, number of such children is consistently increasing.

·       Moreover most of such children do not reach these centres in time as parents are pursuing curative options in the crucial six years of the child’s life.  So a lot of learning that could have taken place gets delayed. 

·       The existing few specialized and well-equipped centres impart training to a few select children. No doubt such children feel secured and get adjusted to the environment at the centre. Unfortunately, even such a few fortunate children also have to return home where there is no special equipment, no communication board, no calendar boxes and the child feels stumped as do her parents.

Thus the big challenge for programme planners would be initiation and expansion of realistic, appropriate and result-oriented services.

2. Need for Early Intervention

The first three years, known as critical period, are as such very important in the life of any child. Most learning in all the developmental areas e.g. motor, communication, cognitive, sensory and social takes place during this period. About 80% of learning occurs through vision and through imitation and observation of people, places and things around them.

The parents and the caregivers have observed that multiply disabled with visual impairment children (MDVI) grossly lag behind in almost all the areas of development. It is also established that provision of appropriate intervention at earliest possible stages will definitely improve their developmental skills, optimize abilities and build a foundation for future learning. Such intervention is equally important for the family members, as home is a convenient and comfortable venue for learning and training for the child.

 

The next challenge for the programme planners is promoting early identification as well as early intervention for such a large number of children living in rural areas.

3. Our Experience

The Blind People’s Association (India), an NGO known for promoting innovative and comprehensive services for persons with disabilities, initiated first pilot project with the support of Hilton Perkins International Program for the children with MDVI children. The areas of focus include:

·       Total involvement of family

·       Providing individual need based and culturally appropriate training

·       Using local and community resources

·       Providing services at the doorstep where community witnesses and becomes part of the child’s progress.

In the process the child becomes part of the existing social system and gets integrated in the family like any other child.

As population of MDVI children is scattered over a vast area and services available are negligible, any solitary approach will not be the right way to reach and provide appropriate intervention.  The BPA thus adopted a multi-pronged strategy of reaching a large number of children.

3.1 Day Care Centres: Such well equipped centres have appointed a multidisciplinary team for the assessment, trained staff for provision of rehabilitative services and counselling to the parents. The focus of the centre is not only the child but the parents. The centre-based training is not provided in isolation as is usually done. In this case, the training is based on expressed needs of the parents. Accordingly the programme for any child is planned in partnership with the parents. The parents observe and many times work hand in hand with the   teachers. In the process, the teachers and other professionals hand over the skills to the parents. Ultimately the child is a part of the family and is looked after by the parents. And in the true sense, the parents become the equal partners in respect of imparting training to the child.

3.2 CBR Programme : BPA also adopted second approach of community based rehabilitation for the MDVI children. To begin with there were many doubts about the practicality, quality and sustainability of the services. Our experience of last 7 years has established that:

·       CBR is the only way to reach out to such a large number of MDVI children in remote rural areas for ensuring their participation in community life.

·       It enables provision of culturally appropriate services.

·       Involvement of family in the process of development of child.

The implementation of CBR programme follows a definite and well planned sequence:

CBR Process

IDENTIFICATION

(DOOR TO DOOR SURVEY: CBR Worker)

SCREENING

(CORE TEAM)

ASSESSMENT

 
   


                 CLINICAL                                         FUNCTIONAL  

        MULTI DISCIPLINARY                              CORE TEAM

                 TEAM

              CURATIVE                                  

              MITIGATIVE                                          FUNCTIONAL                 

                 STEPS                                                  ASSESSMENT

                 

            PARENTS TRAINING

IEP AT HQ LEVEL

                                                                     COUNSELLING

                   -  AREAS OF

                      TRAINING                              DEMONSTRATION                          

                   -  MODE OF                              OF SKILLS

                      TRAINING

                   -  POSSIBLE                              SIMULATION/  

                      OUTCOME                              STIMULATION

                                                                                                                                             

                                                                      EXPERIENCE SHARING

                                                                      

                                                                    REINFORCEMENT

                                     FOLLOW UPAT FIELD LEVEL BY SUPERVISOR

            

                                             REGULAR MONITORING

                                      

3.3 Satellite centers : The BPA believes that services should reach out to as many children as possible while enhancing the capacity of local small organizations. To achieve this objective, the BPA adopted third approach of establishing a chain of centres at selected locations, popularly known as “Satellite Centres.” For this purpose, local agencies working for a single category of disability were motivated, trained and technically supported by BPA to start such a centre for the MDVI children residing in their project area.

·       The children who require intensive services of assessment, and appropriate intervention get an opportunity to come to the centre and avail services, which are not very far from their home.

·       The parents get a common place to meet other parents and share their experiences.

All the three approaches mentioned above are being implemented simultaneously. Each approach is complementary and supportive of the other.

4. Pre-requisites for Success:

Our experience of implementing this multi-pronged approach of reaching a large number of MDVI children has established that the following measures are essential for attaining success of either of these approaches and any combination thereof:

4.1 Family Involvement: Family is not only the first social unit the child interacts but it satisfies her basic needs, prepares her to interact with outside world, provide basic skills for further learning. Each and every member in the family plays an important role.

In most developing countries, which have extended family system, family involvement is all the more important. The grand parents, uncle & aunts and siblings are important members in case of care children and those needing help. For example, the grandmother looks after the baby when mother is away in fields and gives her medicines with great love and affection. The child continuously interacts and communicates with family members, which everyone understands.

In our programme, individual education programme is prepared as per the needs and priorities perceived by the family. For example, It is important for Pinali, 6 years child with anophthlemia, sever mental retardation and communication problems to learn to go to toilet, eat by self and than to learn to read and write, as all children   of her age do or are able to do this. Thus what is important for the child according to parents is included in IEP. The family members are involved in the complete training process, follow up and preparation of assistive devices for the child. This training, participation and involvement ensures acceptance of child in the family.

4.2 Building on Local Resources: The BPA started center based services during 1993, CBR during 1995 in one district, and satellite centres in five districts during 1998 with the financial and technical support from Hilton/ Perkins International programme, USA. We could cover around 250 children through these small centres. While working in these areas, the local supervisor who lives and works in the community itself, mobilized resources and established a permanent centre in Sayla, where the local donor donated a bungalow for the purpose. The community named the centre as “Shamata Kendra” that means “Ability Centre”. This definitely has created a “movement” in respect of proliferation of services for MDVI children at community level.

4.3 Involvement of Government: During1999, the Government of India enacted and adopted the National Trust act. The major objectives as envisaged in the Act are protection of rights of persons with mentally retardation, cerebral palsy, autism and multi-handicapped and providing guardianship and respite care to such children.

Under the Act, the Government has provided funds to start the day care centre and BPA could get funds for all the satellite centres for the MDVI children. This has not only ensured sustainability of the programme but enabled coverage of larger number of children. Thus with the support of the community and the Government, services for children with multiple disabilities have became a part of the regular services.

5. A SILVER LINING

The approach of BPA has succeeded in the following respects:

 

·       Children in remotest areas now have access to services.

·       Training and other services are being provided in familiar environment by the known people.

·       As the training is being provided in functional activities, the child learns the same skills as other children in the community learn and do the same things.

·       Training is being imparted in the most functional way by the use of indigenous material.

·       Involvement and participation of family members ensures social integration.

·       As community witnesses progress of the child, acceptance and participation of the child in community life is ensured.

·       As all the field workers have been appointed from the project area itself, a cadre of rehabilitation personnel has been developed at the grass-root level.

·       A large number of agencies have benefitted through this skill transfer and capacity building exercise.

6. CONCLUSION

We have adopted a multi pronged approach of promoting social integration of MDVI children. In short span of 7 years, we have been able to identify, assess and cover more than 250 children through our  7 satellite centres, 5 CBR programmes and one day care centre at head quarter level. Our indicators of success are:

·       Pinali is now well integrated in her family,

·       Mahesh who is 6 years old has learnt to sit, walk, eat by self, play with other children in the neighbourhood

·       Sumitra 3 years deafblind girl with sever communication and learning problems can sit without support and can eat bread by herself    

·       Demahi 13 months old continues her stimulation exercises at home with the help of her mother

·       Parth uses a locally made special chair and a standing frame

·       Harish goes to the local nursery with his brother and returns back home with other children in his vicinity

All these and many other children have demonstrated success of this approach through their outstanding performance, enhancement of skills, and improvement in quality of life. I am confident that If such innovative approaches are adopted across the developing world, thousands of MDVI children would get integrated in the mainstream of social life – as a matter of their right.


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