According to a WHO study, approximately 360 million people in the world suffer from disabling hearing loss. According to statistics in India, 6.3% of the population (63 million) suffers from hearing loss. Research indicates that every year over 10 lakh babies are born in India with congenital hearing loss or some kind of hearing impairment.Without timely intervention and support these children grow up without access to communication skills or tools. As a result these children experience debilitating isolation living in silence, facing extreme social and emotional challenges all their lives.
Why early diagnosis of Congenital Hearing Loss is important
Deafness is not synonymous with learning disability. Most often children are simply diagnosed too late. If a child is only diagnosed as deaf by the age of 3 years, she would not have been able to access the first key phase of learning language, communication and social skills. This results in her having learnt only about 25 words as compared to a hearing child who would have learned up to 700 words.
Services for deaf children in India have always been developed and deployed by professionals with almost no involvement of the families. A majority of deaf children grow up in hearing families with little or no experience of deafness. Most parents never learn to fully communicate with or understand their own children because they simply don’t know how.
The Role of Vaani in Detecting and Treating Congenital Deafness
‘VAANI – Deaf Children’s Foundation’ specifically addresses childhood deafness and the huge gap in communication it causes between the child and the parent/ the primary caregiver. VAANI addresses the needs of the deaf child in partnership with the primary caregiver. Just like any other parent, a parent of a deaf child wants to make the best decision for their child. Deafness doesn’t change the fact that the parent and child relationship is one of the most complex yet essential, and one of the most nourishing relationships a human has. VAANI strongly believes that if armed with all the information and choices, parents are most often always the best judges to make the right decisions for their children. If empowered, parents can learn not just to communicate with their deaf child but also to effectively participate in their child’s social, emotional and educational development.
VAANI integrates with communities at the grassroots level to work towards identifying deaf children as early in their lives as possible. The team of ‘Teachers of the Deaf’employed with VAANI receive specialised technical training to bring language and comprehension into the lives of the deaf children and their families. An empathetic and enthusiastic environment for every deaf child is created, with the families empowered to further nurture it.
Individual Programs to cater to Specific Needs
No two deaf children’s needs are similar. So, an Individual Education Program (IEP) is drawn up with annual and quarterly goals based on a child’s specific communication, social, emotional and intellectual abilities. One ‘Teacher of the Deaf’ is assigned to each child. The Teacher meets with the child and the primary caregiver once a week for an hour-long session. On other days of the week, the child is encouraged to go to regular school.This is of utmost importance, as we believe the child needs to remain a part of the mainstream and socialise with other children. The teachers at the regular school are also given skill training on how to handle the deaf child in their class and get the best out of him/her.
VAANI, in the past 11 years, has affected 27000 people including 6400 children. The level of awareness on the issue of disability itself in India is abysmal. Add to this, deafness is an “invisible disability”This means that it does not have any visual markers, making it an even more ignored issue even though it’s the number one sensory disability in India. It is due to these reasons why VAANI has launched a campaign this year. The aim of the campaign is to raise awareness on the issue as well as to advocate compulsory implementation of screening for deafness of neonates and infants in hospitals along with early intervention.
With timely detection and the right kind of help, congenital hearing loss can be managed and every child can grow up healthy, happy and completely capable of living a successful, fulfilling life.
Author
Natasha Chandy is a Consultant at VAANI, Deaf Children’s Foundation. Please visit www.vaani.in/silentpact for more information on the organization.