The development of educational and rehabilitation services for people with cerebral palsy in India.

During a three-month Fulbright award to India, I had the opportunity to observe the result of a trend common in the delivery of rehabilitation services in the country. Specifically, this pertains to the effort of one or more individuals in developing a service delivery system for a client population where no services exist. For instance, the country's first rehabilitation hospital for alcoholism was founded by a woman whose husband died of chronic alcoholism (T.T. Ranganathan Clinical Research Foundation, 1991). Similarly, the first educational center for treating children with learning disabilities was developed by a mother who could not find such services for her daughter (S.S. Badrinath, personal communication, August 30, 1993). Although this "grass roots" effort was observed among a variety of client populations, it was most clearly reflected in the delivery of services to persons with cerebral palsy. The purpose of this article is to describe the development and current status of the educational and rehabilitation services for persons with cerebral palsy in India. In order to provide the reader with the social context of this article, some background information about India will be given.

Background

India, which has had a continuous civilization since 2500 B.C., occupies 2.4% of the world's land area, yet it supports nearly 15% of the world's population (Wolpert, 1991). Like the United States, it has a federal form of government, but the central government in India has greater power in relation to its 25 states and 6 union territories. Approximately, 75% of India's population of 843 million live in the rural areas of the country, and 37.4% are below the poverty level (Ministry of Welfare, 1989). Although 83% of Indians are Hindus, there are more than 80 million (11%) Muslims living in the country. The remaining 6% include Christians, Jews, Sikhs, Buddhists and Parsis (Wolpert, 1991). The caste system, which comprised the traditional social categories of Indian society had its roots in the Hindu doctrine of purity of descent. It was based on one's occupation and ranked in a theoretically defined hierarchy. Traditionally, four castes were identified, plus a category of untouchables, but in reality, there are thousands of sub-castes. Despite economic modernization and laws which make it illegal to discriminate against members who are in the lower end of the class structure, the caste system continues to be an important factor in Indian society (Wolpert, 1991).

Beginning in the 1960s, there has been a number of statutes and laws passed which were aimed at improving services for the 75 million persons in the country with disabling conditions (Ministry of Welfare, 1989). The major components of this legislation have involved the following: the development of national training and research institutes in the area of hearing, orthopedic, visual and mental disabilities; the development of vocational rehabilitation centers to evaluate and provide vocational training for rehabilitation clients; the formation of employment exchanges for persons with disabling conditions; and a large number of economic and educational incentives and benefits. With respect to the latter, these benefits range from reduced railroad rates and educational allowances for children with disabling conditions to the requirement that 3% of all governmental job vacancies must be filled by persons with disabling conditions.

In spite of these legal mandates, rehabilitation services are still inadequate for a large number of persons with disabling conditions. Although the official governmental explanation pertains to the large percentage of the country's population that live in the rural areas, and thus, are unable to access rehabilitation services, the disparity between need and the availability of services is primarily caused by the country's poverty and social barriers. In part, the non-governmental or private sector of India's society has played an important role in trying to alleviate this situation by relying on the model of community-based rehabilitation (CBR).

Community-based rehabilitation was introduced by the World Health Organization (WHO) in 1977. It was based on the fact that people with disabilities constitute a large percentage of the population in developing countries, and due primarily to economic factors, do not have access to rehabilitation services. Besides an inadequate rehabilitation service delivery system, the lack of sanitation and ignorance of basic health practices poses further risks to the population of these countries (Periquet, 1984). Simply stated, community-based rehabilitation attempts to utilize the existing resources available in the community so that the rehabilitation needs of the community can be met by workers with less than full professional training. It is felt that the limited amount of training that these workers receive is offset by their fundamental social links to the population in the community which they will serve (Periquet, 1984).

Even though the community-based rehabilitation effort in India has been an asset to the country's rehabilitation system, and is used by the non-governmental sector, there has been some difficulty in its full implementation because of the lack of continuity in service delivery due to the high dropout rate of the workers trained. Specifically, most of the persons who receive training in community-based rehabilitation in India are volunteers, and although a high dropout rate is a problem confronted by most agencies who rely heavily on volunteer help, it is also related to the fact that many of these volunteers, who are young, often leave their communities and migrate to urban areas in order to seek better employment opportunities.

Cerebral Palsy

In comparison to the 700,000 Americans who have cerebral palsy (Cordeluci, 1989), there are 2.5 million individuals who have cerebral palsy in India (Ministry of Welfare, 1989). Major causative factors pertain to prenatal infections and complications at delivery, both of which are related to the absence or inadequacy of health services. Furthermore, over 50% of those individuals with cerebral palsy in India are also mentally retarded (Ministry of Welfare, 1989).

The first facility for persons with cerebral palsy was founded in Bombay in 1973, and is called the Spastic Society of Bombay (Spastics Society of Eastern India, 1992). Although the term "spasticity" refers to a physical condition when the stretch reflex is not inhibited, and in any other context, is viewed as derogatory in our society, the term "spastic" is equated with cerebral palsy in India. The usage of the term, "spastic," in the name of agencies which serve people with cerebral palsy is also common in Great Britain. Presently, there are six societies that provide education and rehabilitation services to persons with cerebral palsy in India. Except for a loosely defined informal relationship, all of these societies are independent, have their own boards of governance, and primarily provide services to those persons who live within their geographical area. During their development, they received technical assistance from professionals in Great Britain and Canada, primarily in the area of special education. To date, there has been no assistance provided by the American professional rehabilitation community. Similar to the trend discussed, most of these facilities were developed by someone whose family member had cerebral palsy (S. Kaul, personal communication, September 3, 1993). The largest facility is in Calcutta, and was developed by a mother who was unable to find services for her son, and some of her friends (Kaul, 1992). Although these women did not have any training or experience in special education, they all obtained degrees in special education at universities in Great Britain and the United States during the Society's early years.

Although there are some differences in the services that these six societies provide, the basic education and rehabilitation service components are identical. These components consist of a special education center, an outpatient division, a diagnostic clinic and social services unit. Although each facility began as a school, they gradually expanded their services to include vocational training and job placement programs. The expansion of their services to include vocational rehabilitation was a response to the needs of the students as they approached adulthood.

Almost one-half of the support of these societies comes from the federal government. The remainder of their income is derived from student fees, which are based on a sliding fee scale determined by the family's income, and an aggressive campaign for private donations. Private donations are solicited through media campaigns and cooperative ventures with the business community. For instance, one can find donation boxes for the societies in most of the retail establishments in all of the large cities in the country. Also, all of the societies receive substantial income from the sale of merchandise produced by the clients, such as, greeting cards and crafts.

The center for special education is structured so that the education provided to a child is based on his/her cognitive ability. A child is placed in one of three educational levels: regular, functional (mild mental retardation) and special (profoundly mentally retarded). There is also a play group program for children, 25 years of age. In addition to academics, the special education curriculum emphasizes the development of communication and independent living skills. For those children who cannot attend the special education center on a daily basis, some of the societies have developed an extension service. This educational service is for children, 2 to 14 years of age, and is held two afternoons a week. The extension service provides instruction in functional academics and develops competence in "activities of daily living" (ADL).

The outpatient division is essentially a resource center. It includes a diagnostic clinic for infants and children, a home management training program for parents or care givers, and provides outreach services to the rural areas. The diagnostic clinic includes an infant screening clinic in which skilled therapists screen infants who are considered as being at high risk for the development of motor problems, i.e., problems during the mother's pregnancy or prematurity. In conjunction with the infant clinic, there may be a baby clinic (0-18 months) for those children who have already been identified as having neuromotor problems. The clinic provides intervention programs, as well as parental training with respect to home management care.

The intervention and parent training programs are an important part of the outpatient division. That is, parents are taught how to identify their child's disabling conditions, and to provide for his/her independent living. The training of parents is equated with community-based rehabilitation and has been extended to the rural areas that the societies serve. In fact, once the parents are trained to provide for the multiple needs of their children, they are asked to provide outreach services to their respective communities. In addition, volunteers from the villages receive training in assessment and home management. Once the volunteers complete their short-term training, they go back to the villages to develop programs for children who have cerebral palsy. The outpatient division conducts regular follow-up to insure that there is a continuity of services. Unfortunately, as previously indicated, this program has the problem of attrition, as well as the limitations imposed by some natural barriers. The training of parents as volunteers is an attempt to decrease the attrition rate. However, trying to overcome the natural barriers is a more difficult task. That is, many of the rural areas become completed isolated during the rainy season because of severe flooding. During this time, it is impossible to reach these communities by ground transportation because the few roads which exist have been washed away.

The newest department of some of the societies is the adult center. This department includes a prevocational unit for those who are near completion of their education, and a postgraduate training center which has the objective of eventual job placement. For those adults who are profoundly mentally retarded, there is an adult leisure and learning center, similar to the activity centers in the United States. With respect to the postgraduate training center, the job placements options are very limited. For example, the adult training center of the Calcutta society was formed in 1992, and provides vocational training in the following areas, food service, printing and packaging, leather works, and computer programming. Most of the training materials have been donated by various businesses, and by some of the foreign consulates. The use of leather works as an area of vocational training appears inconsistent with the mission of the societies. In other words, the Hindu reverence for animal life has traditionally relegated tanners and shoemakers to a very low social position, and contact with shoes is considered very defiling and degrading (United States Educational Foundation in India, 1993). When the author inquired if the training in leather works posed any conflicts for the clients, the response he received from one society director was simply that the traditional views on work and social status were changing. Nevertheless, in the opinion of the author, vocational training in leather works devalues the client by equating his/her vocation with a very low social position.

Most of the societies have a social service division. This unit provides the following services: parent and student counseling, health care referrals, advocacy, and assessment and home management programs for all children with cerebral palsy who attend the country's "disability camps." These camps are outreach projects and organized by the local governments of the various states. The camps are staffed by teams of trained professionals who provide services to children with disabling conditions who live in rural communities. All of the societies have very active parent support groups, and many of these parents volunteer their services to the facility. Furthermore, one of the societies has a project in a rural village where the school and outpatient clinic is entirely staffed by parents who have children with cerebral palsy.

An interesting component of the society in Calcutta is its Institute of Cerebral Palsy, which was initiated in 1987. The purpose of the institute is to advance the knowledge of cerebral palsy and to develop an integrated service delivery system with the government and other private agencies. The institute conducts research on the effectiveness of its programs, and has developed a multi-media campaign to make the public more aware and sensitive to the needs of persons with cerebral palsy. The replacement of "spastic" with "cerebral palsy" suggests an increased sensitivity of the Society to the disabling condition. The institute also sponsors several training programs. This involves home base training at all levels, including short term courses for medical professionals and an one year post baccalaureate diploma program to train special education teachers.

Conclusion and Implications

The evolution and development of the societies for persons with cerebral palsy are consistent with many of the educational and rehabilitation facilities in India. That is, they began because of the absence or inadequacy of educational and rehabilitation services, and were initiated by the private sector, often by a wealthy family member of a child with the disabling condition. If effective in its service delivery system, the agency then received governmental support and became the major advocate for the client population for which they served.

In comparing the development of rehabilitation services in India to that of the United States, the importance of advocacy becomes readily apparent. The role of advocacy is most evident in the delivery of services for persons who have cerebral palsy. However, unlike the consumerism movement in the United States (Cartwheel & Van Boskirk, 1988; Hahn, 1987; Kilbury, Benshoff & Rubin, 1992; Nosek, 1993; Rubin & Millard, 1991; Rubin & Roessler, 1983), where the goal has been empowering people with disabilities to act on their own behalf versus having someone act on their behalf, persons in India who have disabling conditions are often viewed as incapable of providing for themselves or functioning independently. This view is even more apparent with people who have cerebral palsy. In part, this paternalistic attitude may be related to the caste system and the large number of persons with cerebral palsy who also have mental retardation. However, in the opinion of the author it appears to reflect the stage of development of rehabilitation in India. As stated, educational and rehabilitation services have usually been developed by family members for someone within the family system with a disabling condition. Furthermore, with the possible exception of persons who are blind, there are no consumer groups in India. In closing, the author is reminded of an early monograph on the concept of citizen participation in rehabilitation and social welfare (Thursz, 1969). In this monograph, reference is made of the term "noblesse oblige," or the obligation of generous behavior associated with high rank or status. The term was used in a discussion on how our country has evolved from the time when new social programs were the result of having the affluent reaching down to help the impoverished and the weak. Although this role model is still prevalent in the development of India's education and rehabilitation service delivery system, there are indications of a greater awareness and sensitivity to persons with disabling conditions. A significant part of this evolution can be attributed to the societies who provide services for children and adults with cerebral palsy.

References

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James F. Scorzelli, Department of Counseling Psychology, Rehabilitation and Special Education, 203 Lake Hall, Northeastern University, Boston, MA 02115.