EMPOWERMENT OF MOTHERS OF HEARING IMPAIRED CHILDREN IN CBR PROGRAMMES

Rehabilitation of hearing impaired children was given the much needed boost during the last decade, with the launch of community based rehabilitation (CBR) programmes by the government of India and many non-governmental organisations. Given the enormous number of hearing impaired persons amounting to about 4.5 million excluding those below the age of 5 years as of 1991 (1), and the fact that more than 30-40 % of them are below the age of 14 years, requiring early intervention, education and employment, CBR is seen as the most viable means of service delivery in India. However, the evaluation reports of the District Rehabilitation Centre Scheme (1) and of a CBR programme sponsored by a non-governmental organisation (2) are not particularly encouraging. As reported by Pandey and Advani, the "involvement of the community was low and this was an area where the DRC was found wanting, and although the programme had been `community located' it had not been `community based' ". Similar observations are reflected in the Action Aid evaluation report though to a lesser degree (2).

This paper addresses some of the issues pertaining to the success of the rehabilitation of hearing impaired children in CBR programmes and possible ways of enhancing such success within the existing framework. An understanding of the limited success achieved in the rehabilitation of hearing impaired children in CBR programmes, whether sponsored by the government or non-governmental organisations, is to be found in the nature of speech-language acquisition. Normal children acquire speech and language skills over an extended period of more than a decade stretching from birth to at least the early adolescent years. In fact the upper limit of age for completion of speech-language acquisition in normal children has been periodically raised since the 70s, with the increasing awareness of the subtleties of the language acquisition process. During this period, with all their senses intact and with adequate interaction with those who use spoken language, children gradually master different areas of language such as speech sounds (phonology), meaningful units of language (lexicon), rules of combining words into lager units (syntax) and use of various units of language in different contexts (pragmatics), thus becoming efficient communicators. For a hearing impaired child, his lack of hearing cuts him off from the natural contextual input on which he can base his language acquisition.

The widely held belief that use of a suitable hearing aid by itself is an adequate remedy for the difficulties of the hearing impaired child, is a fallacy. In reality it is only the beginning of his rehabilitation. Given the state of current technology in aids and appliances for hearing impaired persons in the third world countries as well as technologically advanced countries, the possibility of enhancing the hearing of the hearing impaired child to normal levels with a hearing aid, is still a far cry. Hence, special efforts have to be made to enhance the speech-language experience of the child, when the speech-language rehabilitation begins. It must be remembered that the normal child acquires language by continuously interacting with others in his family who speak, such as his parents, family members and many others in his environment, over a period of several years. What the hearing impaired child requires is similar, but enhanced language experience over an equally, if not more prolonged period of time, in view of his auditory processing difficulties. In the author's experience of the last two to three decades in speech-language rehabilitation, children who have had committed, patient, interacting, speaking, significant persons to care for them, who provide them with enhanced speech on a day to day basis over an extended period of several years, stand the best chance of being successfully rehabilitated. It is this fact that has made the Maternal Reflexive Method one of the most successful methods of language rehabilitation, since it capitalises on the intensive, interactive nature of communication between mothers and young children.

Given the magnitude of the problem and the time required, the major difficulty is to find such persons for each of the hearing impaired children who require rehabilitation. It has also been the author's experience that behind every successfully rehabilitated hearing impaired child, there has been a very committed and hard working parent, in most instances the mother. It is therefore logical that mothers be targeted for inclusion in rehabilitation programmes. The mid term evaluation report of Action Aid (2) substantiates this premise that CBR programmes should involve the mother of the hearing impaired children in its activities in order to have a better chance of success. Naidu et al emphasise their finding that "mothers of disabled people are the primary care givers in this community", and suggest that "one should target this group for awareness building programmes" and that "mothers may be the key channel for enlisting community support" (2).

What is advocated here is the enrolment of mothers as active participants in the rehabilitation programmes, at least as far as the hearing impaired child is concerned. Viewed against the framework of the current models of CBR, the mother is perhaps the best suited replacement for the grass-root level worker, that is, the Village Rehabilitation Worker (VRW) in the District Rehabilitation Centre scheme and the Community Rehabilitation Worker (CRW) in the Action Aid programme. The VRW is usually an Anganwadi worker with her full-time own duties to carry out. To expect the VRW to fulfil the requirements for a successful community worker by paying her a nominal additional amount for working with and monitoring the rehabilitation of hearing impaired children, in addition to her own full time duties, is a tall order. In contrast to expect the CRW in the Action Aid model to fit this bill is perhaps more realistic. The CRW in the Action Aid model is a full time rehabilitation worker, who is often a literate family member.

Since mothers are found to be the primary care givers of disabled children, the CRW in a CBR programme should logically be the mother rather than an unemployed person or any other family member. It would enhance the commitment and increase the chances of the intervention being carried across to the natural environment of the child, which is necessary for successful rehabilitation. An often cited objection to the inclusion of the mother of the hearing impaired child as a paid member of the rehabilitation team has been that one is paying the mother to carry out what she is naturally expected to do. While this objection may be valid in case of a mother who is unemployed, hails from higher socio-economic class and whose responsibilities are restricted to the daily care of the home and family, it may not necessarily hold good for the average mother encountered in the CBR programmes. Most CBR programmes are targeted at the rural and urban poor, who cannot otherwise access any other forms of service delivery directly. The mothers here are likely to be wage earners in addition to being housewives, with none of the supports available to middle and upper class family housewives. In such cases, to expect the mother to prioritise the rehabilitation of her hearing impaired child over her other responsibilities is impractical. Hence the mothers who are active in CBR programmes will need to be compensated for their loss of income if they are expected to work on the communication skills of their hearing impaired children. To ensure that the mother does spend the time as envisaged, one could perhaps insist that the speech-language interaction take place in a centre such as the Anganwadi or Balwadi where the mother should be present through much of the day and attend to the interventions to improve the communication skills of the children (not necessarily her own, as is the practice in many of the successful schools for hearing impaired infants and young children). The skills acquired in such a monitored set up will then automatically be transferred to the home situation. While it would be ideal if the family happens to be literate, literacy in itself is not a must for speech-language rehabilitation. The possibility of finding literate mothers in the rural areas may not be very high. Illiterate mothers also do an excellent job of communicating with their babies and leading them on to normal speech-language acquisition. In fact if thoughtfully implemented, illiterate mothers enrolled as CBR workers could be simultaneously introduced to literacy skills, thus complementing adult literacy programmes.

An additional aspect that requires consideration is the length of time that a mother would have to enrol as a CRW. While a period of 1-2 years soon after the identification of hearing impaired children should be adequate, the more efficient mothers may be recruited as master trainers. Many of the teachers of the deaf are known to be mothers who have capitalised on their experience with their own children, before they became professionals. This could well serve as the answer for the need for experienced personnel. The empowerment of mothers in the CBR programmes for hearing impaired children will also lead to CBR programmes becoming truly community based rather than community located.

ACKNOWLEDGEMENT

This paper was presented at the ISSRD South Asian Regional Workshop on the Development of Culturally Relevant Intervention Strategies for the Psycho-social Development of Children and Youth in Poverty, Chandigarh 1995.

REFERENCES

1. Pandey RS and Advani L. Perspectives in Disability and Rehabilitation. New Delhi :Vikas publishing house Pvt. Ltd., 1995.
2. Naidu DM, Basavaraju VS, Easa F, Abraham C, Thomas M. Mid Term Evaluation of an Urban Community Based Rehabilitation Project - A Discussion on Family and Community Involvement. ACTIONAID Disability News 1995; 6 (2): 56-58.

Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 10 @ No. 1 @ 2000

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