A software,'The Automated Software Screener', to evaluate developmental disabilities in children has been evolved by Sampathkumaran Veeraraghavan, a computer scientist and Dr Karthik Srinivasan, a general physician, both interested and involved in children with disabilities.
The software consists of a computational matrix of 48 questions, the responses to which is expected to provide vital leads on a pervasive developmental disorder, such as autism. It is a pre clinical tool to evaluate whether a child's developmental milestones are age appropriate.
The software can be used even by an uninitiated for a preliminary disability screening. It assures a parent using it to feel reassured when her child attaining developmental milestones age appropriately.
Brahmam, a forum aiming to develop technological aids for physically challenged people has extended its expertise to the creation of the software.
Madhuram Narayanan Centre (MNC) for Exceptional Children has played a key role in the field testing of the system.
The frame work of the screener comprises an automated screener system, a report generator system and gaming techniques (which are being fine-tuned). Based on the responses given by the primary caretaker, the screener evaluates the child in the areas of fine and gross motor, social and language.
Technology in the services to the persons with disabilities has to be planned suitable to the livelihoods of the persons in the settings they live in, both rural and urban. Technology should make the life of the person with disabilities more comfortable, more productive and more self enhancing, towards a better quality life.
In the digital age, the key to the information society is, universal access, with every one having equal opportunities to participate and no one being denied of any benefit from the available technology, particularly the persons with disability.
The Conference on 'Information Technology Enablers for Persons with Disability' (Intend 2001) organize din collaboration with IETE, Chennai Chapter was an effort to 'have a first look and a fresh look at new possibilities and promises of Science and Technology, more specially, the dominant Information Technology of today, for the benefit of the disabled of India.'
Between 2001 , the year of the INTEND Conference and the current year 2008 there has been a sea change in the development of technology for enabling the persons with disabilities, but in many ways it is still to filter down to the masses in affordable ad accessible ways.
The basic question asked at the Conference 'How can technology be made more human and humane' still remains to be answered more expansively.
The focus of the World Telecommunication and Information Society Day is therefore on 'Equal Opportunities and Participation in the Digital Age for Persons with Disabilities'.
This need for making technology available and affordable can be made possible only by synergizing the professional potential in the technical bodies such as IETE with the man power resource of the non-governmental organizations and the social responsibility of the corporate groups. It is here that professional volunteerism will play an active role.
The presentation concluded with the message received by the IETE on the celebration of the World Telecommunication Day,
~ Mr Hamadoun I Toure', ITU Secretary General
ICT is being used in the documentation, analysis of data and in training programmes at the Centre. Upaneeta, a software was prepared for the purpose by software professionals Lakshmi Narasimhan and Madhu volunteering their services beyond their working hours and using their leisure time.
Children assisted by teachers and parents use the educational software prepared by Raj Anthony, a software trainer volunteer, very effectively at the Centre.
At the behest of the Government of Tamil Nadu the software for the creation of a database on disabilities has been accomplished. This has been developed, again by a group of software professionals volunteering their services, headed by the Sampath Kumaran and his team, Satish, Hemant and Venkat. The data analysis will throw light on the etiology of the disabilities and will helping planning measures for prevention of their occurrence. It will also display the number of benefits given by the government of Tamil Nadu to persons with disabilities, as maintenance grant, aids and appliances.
It is a matter of pride that both the soft wares, for documentation of the childrens' progress and that for the creation of a database on disabilities have been prepared as a voluntary service by IT software professionals in their leisure time and with a total dedication. This type of voluntarism needs to be highly commended and encouraged.
Matru Devo Bhava is the opening line of the invocation in recognition as divine, the strengths in motherhood. This strength has pervaded throughout the history of mankind, universally in all ancient cultures and has become embedded as a way of life in child-rearing practices too, in the Indian ethos.
Historically, India, is an ancient country with multitude of diversities, continuing to have a living civilization, with age-old child-rearing practices, still relevant.
A repertoire of information is available from traditional sources - The Vedas, oldest text, 3000BC - accepts persons with disabilities, as part of a natural order. The Garbopanishad, of the post Vedic Period, 1000BC; is a treatise on embryology. Susruta, a rehabilitative surgeon; 700BC was skilled in corrective surgery. Gautama Buddha and Mahavira, self-actualized princes turned ascetics of the period 275BC preached the acceptance and not rejection, in the care and management of persons with disabilities; Chanakya the astute statesman, 400BC - legally banned the use of derogatory terms; when referring to persons with disabilities, Patanjali, 200 BC codified yogic practices in the prevention and therapy for disabilities; Caraka,the travelling physician,100 BC classified persons with intellectual disability; Vishnusharman,100BC teacher and author, gave the Panchatantra, the first special education text; in the Sangam period in Southern India, 200BC to 200AD- community-based services were well-established as a social responsibility of the royals; the Alwars 600-900AD, Meenakshi Pillai Thamizh 600 AD, the poet savants, sang hymns on the mother child care glorifying the child-rearing practices.
With the advent of the Colonial rule, circa.1800 to 1947 the British rulers introduced institutionalization for persons with mental retardation as a matter of administrative convenience.
This practice however gradually weakened the prevailing indigenous systems which were based on community-based participation and rehabilitation, and, in due course had even annihilated many of them.
It is worth while to ponder on the status of intellectual disability today, in 2007, in the country, comparing it to what had been the situation in 1947, the year of independence.
The population in 1947 was around 330 million. The population in India is over 1 billion (2007), a leap from what it was in 1947.
Of this number, the persons with intellectual disability, on a conservative estimate, is around 9 per 1000 (Survey 2001).
The exact data on the prevalence, levels and types of disability among the persons with intellectual disability has not yet been ascertained But it is heartening to mention at this juncture that an ambitious scheme is being launched by the Govt., of Tamil Nadu, S. India of a door to door survey. The software for data entry is being prepared by a group of volunteers.
This is being conducted for establishing the etiological bases for the occurrence of all the types of disability. With the outcome of the results of the survey the government plans to launch preventive programmes and to provide the needed array of services to every one with disability.
In the last few decades of the 20th century several universal legislations had been enacted in the area of disability to which the Government of India had ratified and had also followed up by the enactment of the four legislations, namely, the Mental Health Act, 1987, the Rehabilitation Council of India Act 1992, the Persons with Disability Act, 1995 and the National Trust Act, 1999 all of which have made the provision of array of services from prevention to adult life programmes mandatory in the country.
In this context, recognizing the dire need for providing timely early intervention services for children with mental retardation, Madhuram Narayanan Centre for Exceptional Children (MNC) was established in 1989 by the INDCHEM, Research and Development Laboratories (IRDL) a unit of the Sanmar Group of Companies as a matter of societal concern.
The establishment of the Centre was a sequel to the development of an early intervention programme pioneered by the IRDL. The programme UPANAYAN, meaning to lead along was evolved by an interdisciplinary team of experts as a systematic early intervention programme crucial to children with mental retardation and suited to the country's cultural milieu.
The programme so developed has been based on the scientific knowledge, of the east and west and judiciously blended with the inputs in the subject from the time tested child care legacy of the country, India.
It is used both manually and electronically.
This programme filled the void in the area of early intervention services to children in the age group, birth to 6 years with mental retardation. It has been a turning point for the Centre in its services to persons belonging to the most neglected of human handicaps, that of Mental Retardation.
The programme was dedicated to the nation by Mother Teresa at Kolkata in July 1992. A unique feature of the implementation of the programme is the total involvement, empowerment and rehabilitation of the mothers in the training of their children with disability.
Even though the service providers in the country know what to do, why to do, when to do, where to do, with whom to do and how to do in the provision of services for the population with disability, yet, the availability of only a few trained personnel to match the needs of the huge population of persons with disability, and insufficient funds to initiate and sustain the programmes, have slowed down the provision of services all over the country.
In 1968 a research study in Chennai, India, established the efficacy of training mothers as carry over agents for their children with mental retardation . The off shoot of this study was the evolution of a result-oriented management system in the country with parents as the integral part of the programme, now known as the Individualised Educational Programme.
Through the different National Level Institutes established by the Government for research and development in the area of disabilities and with the enactment of the Rehabilitation Council of India Act, standardized training programmes are being offered to develop the much needed human resources particularly by providing training to mothers and empowering mothers as catalysts in the implementation of the programme.
Having become aware of the efficacy of intervention services for their wards, the parents have begun initiating service centres and pressing their demands for more services. This led to the formation of parents' association, the first of its kind in the country, in 1964.
Though the initial pick up was slow, now in the recent two decades the empowered parents formed a parents' association at the national level, with representation in the government bodies, involving themselves in policy making and in initiating the setting up of service centres.
Another important mission of the Centre has been to reach out early intervention services to the unreached in the country through dissemination of the early intervention programme. It has conducted 2 workshops sponsored by UNICEF to disseminate the programme through several in service programmes to service providers.
The institution has provided services free of charge so far to over 3500 children directly and empowered their parents by affirming their productivity and contribution to society.
Through its activities, the Centre has made a difference in the lives of over 6000 children with mental retardation and their families directly and through the institutions established on its initiative. Its avantgrade services in the field of early intervention in mental retardation continue to have far reaching positive impact across the country in management of this disability.
The Centre conducted the 1st International Conference on the Importance of Early Intervention in 2004 and 3 National Level Workshops since then. In December, 2007, the Centre conducted the 4th National Level Workshop and the 2nd International Conference on the Importance of Early Intervention.
Over the past 18 years the Centre has been programming over 3500 children in early intervention. The required data on each child and the progress each child has made has been carefully documented in the software, Upaneeta prepared by a group of graduate students in electronics and computer science who gave their leisure time voluntarily towards its development. Even though they are all employed in different organizations in the IT industry they continue to help the Centre in following up with any updates required in the software.
As mentioned earlier, the Govt. of Tamil Nadu has planned the creation of a database on disabilities for the population of Tamil Nadu. In this connection
We are happy to acknowledge with gratitude the voluntary offer made by the 1EEE Gold represented by V. Sampath Kumar and his team to develop the software required for the purpose.
It is a matter of pride for MNC that Sampath kumar and Dr Karthik together have developed an online screener for autism which could be used by parents when they observe any deviation in the development of the child. The Government of Tamil Nadu has designated the responsibility to the Centre to develop the questionnaire and the compatible software for the creation of a database on disabilities in Tamil Nadu.
Recognizing the services of the Centre, the State Government awarded the Best Institution Award and the Chief Minister's Award in the years 1994 and 1996 respectively. In the year 2004, the Centre received the National Award for the Best Institution from the then President of India, Bharat Ratna Dr. APJ Abdul Kalam.
The challenges of a large population with the literacy rate at 60%, and a 40% continuing to live below poverty line, make the scenario in services to disability a complex one. Compounding this situation, are the following challenges, the insufficient number of required trained professionals, lack of prescribed standards in the delivery systems and quality control, and inadequate financial resources.
With the effective utilization of the valuable human resource in parents as teachers, and with the proactive government in initiating policies for the welfare of persons with disabilities, the future is bright with many more early intervention centres being established with programmes and services to meet the challenges. The legislations initiated by the government will, in all certainty, strengthen its measures in making available quality services. In this endeavour the non governmental organizations are partners with the government in making it a reality for every child in need to be provided with early intervention services.
Matru Message from Mother Teresa
Following a UNICEF supported project, sponsored by the Network for Information on Parenting (NIP) and executed by MNC, the Centre conducted a five-day disability camp in Chennai for 30 children with multiple disabilities from the district of Ramnad, Tamil Nadu, requiring immediate and inevitable medical and educational interventions from the 29th of October to the 2nd of November, 2001. This population of disabled children and their “high risk” mothers were examined. Most children [of those examined] showed manifestations of orthopedic disability and visual hearing impairments, besides having health conditions related to moderate to severe malnutrition. It was seen that the main cause for the large number of disabled children in that particular area was the lack of timely antenatal care of pregnant mothers, inaccessibility to well equipped hospitals and clinics for delivery and severe malnutrition in mother during pregnancy.
Over 16 specialists from different disciplines attended the camp giving the required consultations and rehabilitative treatment to the children. At the end of the camp, the identified children/mothers who were given the required immediate and inevitable early intervention were tracked at Ramnad for further follow ups. Three of the children who had the birth defect of cleft palate and hare lip had been surgically treated totally free of cost thanks to the SMILE project at Sri Ramachandra Medical College and Hospital, Porur, Chennai. This set the ball rolling for over 70 others who with the efficient planning at the Collectorate, Ramnad who also benefited from the corrective surgery at the hospital mentioned earlier.
A similar endeavour was carried out in a few slum colonies in the neighbourhood of MNC. The selected population consisted of members of households [over 1400] located in the area. MNC used its own parent groups and executed the project.
Specialists from different disciplines [audio therapist, malformation corrective therapists, geneticist, nutritionist, general physicians, and the like] were invited for this project and free assistance and counseling were provided to the families.
At the end of the project, small service groups were formed among the population to reinforce the programme on an ongoing basis.