Research Consultant (Job Code: RC)
“Status of infant screening, early identification and intervention of babies and young deaf children in India”
Concept Note for a feasibility study
VAANI, Deaf Children’s Foundation came into existence in Kolkata, West Bengal in August 2005. A nation-wide study conducted in 2002 on the status of deaf children in India was the first step in the creation of VAANI, Deaf Children’s Foundation.
The study showed that there was very little or no understanding of the complexities of deafness in babies and young children and therefore limited involvement of families in the lives of their deaf child, and sometimes very little involvement in the upbringing too. This was not because families did not care for their deaf children, they did not know HOW to care for them. Since there was, and still is, little understanding about what being deaf means, families with deaf children are unable to claim their rights from governments and service providers, like other disability groups do. As a consequence, the majority of deaf children continued to face an unacceptable future of poverty and disadvantage.
VAANI’s vision is to eliminate the most fundamental and overlooked problem with childhood deafness – the inability of the child to communicate with his or her own parent. We believe that every deaf child is entitled to total and complete access to communication, education, protection and equality in all spheres, and information and knowledge to reach his or her full potential as an individual and a member of society with respect and dignity. It is our commitment to create an empathetic and enthusiastic environment for every deaf child and to empower their families to nurture it.
Our mission is to bring language into the lives of deaf children and their families and thus enabling them to have meaningful conversations between themselves and the world around them.
Scope of the Study
After 11 years of work within the country, we have realised that we need to relook at our strategy and focus area of work to take our work to the next level. We are dealing successfully with young deaf children from around the ages of 5 onwards. However, we now need to and focus on trying to identify babies when they are born and initiate intervention strategies that involve their parents. To build a strategy on how this should be done at a macro level, we are wanting to conduct a feasibility study which clearly gives us an idea of the status of early screening, identification and intervention for deaf children in India.
Some of the major issues the Study will have to address are
- What are the government policies on early screening, identification and intervention of deaf children in India
- What statistics and numbers, if any, are available and what are the sources for this information
- Who are the NGOs and GO depts. running active programmes in this area
- What are the ground realities of what is actually happening
- What is the role of parents in supporting their children’s development
- What kind of training is available for parents and teachers
The research methods should include:
- Visits to the National Institutes on Hearing Handicap and major NGOs in the field of Hearing Impairment;
- Visits to CBR programmes and other programmes on early identification and intervention for deafness
- Focus group discussions with parents, deaf people and teachers in urban and rural settings using thematic questionnaires based on the reporting criteria;
- Meetings with policymakers in the deaf sector to gauge what is available and what is not in terms of resources, both material and human;
- Collection of materials in the way of publications, eg nationally prepared lists programmes in the country;
- Analysis of records and policy papers from institutes, the Rehabilitation Council of India, the National Institutes of the Hearing Handicapped and the Government of India;
- Identification of models of good practice, be these schools, training programmes or anything else; and so on.
Questionnaires for use in focus groups and interview schedules for meetings with the heads of institutes and policy makers shall be discussed with VAANI as far as is reasonably possible.
The report will have a research-based format including:
- Introduction: General information about the status of early screening, identification and intervention, NGOs, the prevalence of deafness, the rationale for the study, etc.
- The methodology used: Descriptions of what was done, where and how.
- Report of Findings:
- Service provision models both urban and rural, including NGO’s and Government programmes, CBR and special schools
- Teacher training
- Attitudes and levels of awareness, including myths and superstitions
- The ground realities of what is actually happening
- Analysis of Findings and Recommendations
- Appendix with lists of organisations visited, people met, sample interview schedules used and focus group themes