Human brain is the most unique in our world, in our solar system, and as far as we know, in our galaxy. Yet, we do not even know at least 1/3rd of the functions of the human brain, not to mention about complex functions such as cognition, language and motor control. Vast majority of the disorders that affect the nervous system remain non-curable even with our best effort and knowledge.
When the unique functions of the brain are developmentally delayed or deviant or lost, it will not only have a profound impact on the individual, but also on the family and the society as a whole. The condition interferes with his/her independent living, and seriously affects his/her interactions with the members of family and society, leading to loss of self-esteem and dignity. There is an increase in the numbers of persons with these maladies in all societies irrespective of the ethnicity, gender, age and socio-economic status. It is imperative of any civilized society to provide them an accessible social environment and to facilitate remedial measures so that they can lead a successful life as any other individual in the society.
Neurological disorders demand multidisciplinary intervention at a multi-functional level. Unfortunately, till date, there has not been a single organization in our country that championed their cause. Even though the Government of India has taken major steps for the welfare of the differently abled, these measures have been based just on a social model, rather than on a bio-psycho-social model as recommended by the World Health Organization (WHO) through its International Classification of Functioning, Disability and Health (ICF) formulations.
The Institute for Communicative and Cognitive Neurosciences, established under Society for Rehabilitation of Cognitive and Communicative Disorders (SRCCD), has its roots in the Aphasia and Behavioral Neurologic Clinic established in 1992 at Sree Chitra Tirunal Institute for Medical Sciences and Technology (SCTIMST) by a faculty member of Dept. of Neurology as a research project. The clinic conducted studies on children and adults with speech, language and cognitive disorders. The major hurdles encountered at that time were lack of facilities, both of technical manpower and infrastructure, for the comprehensive management of these disorders, as well as lack of awareness about the disorders among the medical fraternity and health policy makers.
The steady increase in the number of children and adults attending the clinic necessitated the need to understand the dimensions of the problem. Subsequently, an epidemiological survey was conducted in 10 panchayats (rural areas of Kerala) of Kerala, assessing 80,000 children. 10-12% of children <15 years and ~17% of school-going children were diagnosed with some form of cognitive or communicative disorders or learning disabilities that interfered with their performance at schools. The result of the survey created serious apprehension among the public, and the matter was reported by the media with due concern.
Life begins much before the actual birth. So is the case with Institute for Communicative and Cognitive Neuro Sciences (ICCONS). A series of events, one leading to the other in rapid succession, culminated in the birth of ICCONS.
The event in this process was the ‘Behavioral Neurology Clinic at Sree Chitra Tirunal Institute for Medical Sciences and Technology’, Thiruvananthapuram. This clinic has been conducting studies on children and adults with speech and language disorders and cognitive defects since 1992. Surprised by the steadily increasing number of children attending the clinic, the clinicians undertook a field survey to understand the dimension of the problem of these children in the community. The results of the survey have shown that as high as 10 percent of school going children in Kerala has one or the other type of communicative or cognitive defects that seriously affected their performance at school.
With a sense of deep concern and commitment the investigators and representatives from the ministries of Health and Education, Govt. of Kerala formed a charitable society in the name of “Society for Rehabilitation of Cognitive and Communicative Disorders” (SRCCD), which was registered in February 1998 under the Travancore-Cochin Literacy, Scientific and Charitable Societies Act of 1955. The Hon’ble Ministers for Health and Education are the Patrons of the Society, as the issues engaging its attention do not fit neatly into disciplinary boundaries of health or education, but cut across their boundaries. The main objective of the Society is to provide a comprehensive, multidisciplinary, professional rehabilitation service under one umbrella for the benefit of people with cognitive and communicative defects in our country, particularly in Kerala. To reach the vast number of the affected people, adequate professionally trained manpower is a prerequisite. Creation of such a workforce who will take on responsibility of delivering a good and quality service is also a key objective of the society. To fulfil this obligation, the society underlines the need to set up training institutions in the state, which will encourage and equip professional and other personnel to take on the responsibility. The society also aims at high quality research that will focus on the importance of studies in regional languages and the need to synchronize the research activities by professionals belonging to various disciplines, by overcoming barriers of their disciplinary boundaries and other factors, which hamper the advancement of good research. Building an awareness among the medical and other professionals as well as public about their individual role in providing quality service and the personal and professional benefits to be gained from doing so is another important objective of this society.
The society took the important decision of setting up an “Institute for Communicative and Cognitive Neurosciences” (ICCONS) in Thiruvananthapuram, a decision of great significance for the future of all those with cognitive and communicative disorders in our country. Hon’ able Chief Minister of Kerala, Sri. E. K. Nayanar formally inaugurated the establishment of this institute on 2nd October 1998, as an autonomous institute partly supported by the Government of Kerala.
Presently housed in a rented building in Ulloor, Thiruvananthapuram, the institute is running a regular outpatient service with a multidisciplinary team consisting of neurologists, speech pathologists, clinical psychologists, sociologists, clinical linguist and special educators, carefully evaluates each client and gives its recommendations to the therapist for appropriate rehabilitation program. The team also monitors periodically the progress of each client.
For the benefit of those children who, because of the speech, language or learning disability cannot attend a regular school, the institute runs a special school for them in its premises where they are taught and trained by teachers, specialized in this field.
The philosophy behind the society’s programme is to base its services in the community, as far as possible, as an integral part of primary health care service because, it only can offer the hope of delivering effective rehabilitation service at relatively low cost and certainly more conveniently to the needy people, than any institution or hospital – based programme. The Institute deputes a multidisciplinary, professional team on a fort nightly basis, which organizes out- reach clinics in the primary Health Centres in different regions of the State.
Aware of the fact that only a specially trained teacher, possessing appropriate basic knowledge and understanding about cognitive and communicative defects, can successfully teach children with such disabilities, the Institute also conducts regular training programmes for school teachers in each district.
As family plays an important role in the rehabilitation programme, the Institute holds regular “Awareness and Counselling” programmes, where the family members of the affected children are given basic information and counseling regarding the problems of their child and they are also encouraged to be actively involve in all the rehabilitation programmes.
To sensitise professionals and public alike to the problem of cognitive and communicative disorders in the communicative disorders in the community, the Institute organises regional, short-term, orientation courses for the benefit of doctors, teachers, anganwadi workers and public. The Institute has christened this programme of awareness and awakening as “Vignana Jyothi”. In addition to all these activities, the Institute also organises periodic seminars, symposium, workshops and refresher courses for professionals and paramedical personnel and publishes handouts, brochures, booklets, posters etc. as part of its public awareness and education program.
DRight from its inception, the society is conscious, of the fact that, not one, but a number of institutes or centres are required to meet the demands of a large number of affected people. Towards that end, the society has plans to establish at least 3 model comprehensive rehabilitation centres in different regions of the state.
Putting in place an institute like this is all very well. Too, often such model institutions in our country remain dependent upon some agency funding, the charisma of a single person or a small team of interested professional or the enthusiasm of a small region. This institute needs special attention for the diffusion and expansion of its successful programmes for the benefit of a large portion of the society in a sustainable fashion. To meet this enormous challenge, it is important that the government should recognise such services as essential to the social and economic well being of its people and encourage them. In this task, concern, co-operation and contribution by the public are also equally important.
In this context we gratefully acknowledge the benevolent donation of 4.5 acres of land we gratefully acknowledge the benevolent donation of 4.5 acres of land with 39000 sqft. Building at Shornur, Palaghat (North Kerala) by Shri. V. Govindankutty.