Daily Archives: December 2, 2019

#ThisAbilityMatters – Rising Above Society’s Stereotypes, Pravin’s Journey In Challenging His Disability & Becoming A Role Model To His Son

“I am not broken nor a problem to solve, I am not a learning tool to make you more evolved,

“I’m a passion and a person, I have ambition, love and drive,

“I could be free of all the shackles you draw on me in your mind if you’d let me be.”

Tilly Moses

#ThisAbilityMatters is a co-created campaign with Save The Children India that aims to push the discourse on the need for self-reliance and independence of India’s disabled children.

Nishant Pravin Bambarkar dreams of being India’s best teacher when he finishes school. “I’ll be the top painter and will teach painting to my students,” says the gusty 17 year old with an ear-to-ear smile. “I have been learning to paint from baba from the time I was little and I feel he is the best teacher. But I want to be even better than him, the bestest in fact.” Nishant’s teacher and father, Pravin Dattaram Bambarkar, unlike most other teachers was born with congenital deafness. Pravin taught and guided his son Nishant, who has normal hearing ability, with sign language and expressions.  

Pravin lost his father at a very young age. Without a breadwinner, the family of five – Pravin, his two younger siblings along with his mother and grandmother – were left forlorn. His mother and grandmother took up menial jobs that would hardly provide even the bare minimum to raise the children. The circumstances drove Pravin’s mother into severe depression and she was unable to continue working. A few years later, his grandmother passed away, leaving the children to the help of their neighbours, who provided them with food and clothing for some time.

Pravin was brought face to face with Save The Children India. Had he been initiated into our program in his early years, his progress would’ve been much quicker. His journey in dealing with his inability to hear, took him through a series of highs and lows. From learning sign language, completion of an informal education, to obtaining a Diploma in drawing and painting from a government run Vocational Rehabilitation Centre, Pravin’s spirit to never give up, lifted him from a life of dependency.

After his Diploma, Pravin took up several ad hoc jobs to support his family. He was exploited and cheated by most of his employers who either under paid him or made him work extra hours without compensation. Frustrated with this treatment, he approached Vipula Kadri at his alma mater at Save The Children India. With a fair chance on several projects, Pravin did exceptionally well on the work he took on.

Meanwhile, Pravin completed his formal education along with another vocational technical course from a government institute. Today he is employed as an Assistant Teacher with the Special Care Centre at Save The Children India and has been passionately teaching arts and crafts to the children with special needs at the school.

Pravin has a natural gift of the arts and took to pottery, painting and ikebana just like a fish takes to water. He is the only Indian who has represented India in all the above three categories at the International Abilympics in India, Bordeaux (France), South Korea and Shizouka (Japan). Contestants from more than 35 countries vie for the top three spots in these competition. He won bronze at the International Abilympics 2005 in the pottery category and was also given the award by Dr. APJ Abdul Kalam. He has won several other competitions and his achievements have been recognized by the state and central governments. 

Today, Pravin is married to Nalini who is also an alumni of the special school run by Save The Children India, They have two loving sons, Nishant (17 years) and Pranav (11 years), with normal hearing abilities. Both of them have grown up being taught in sign language. Inspired by his father, Pravin’s elder son has chosen fine arts as his subject for his graduate studies. Nishant says, “Sign language must be made mandatory in all schools so that there’s no barrier between the hearing impaired and other people.”  

#ThisAbilityMatters – Decoding Project Dhvani & It’s Work On The Invisible Condition Of Hearing-Impairment With Children

It was the dream of Mrs. Vipula Kadri, Founder & National Director, Save The Children India, that the organization start an early intervention program for hearing impaired infants and children. Her foresight led to the incubation of Program Dhvani, to identify and treat hearing loss in early childhood, helping children with hearing impairment listen, learn, talk and be integrated into society.

In conversation with Akanksha Dhuri, Program Head of Dhvani, whose 10 years of association with the Early Intervention Centre for Hearing Impaired (since it’s inception) gives us insight and understanding on the urgent need for early intervention amongst children.

#ThisAbilityMatters is a co-created campaign with Save The Children India that aims to push the discourse on the need for self-reliance and independence of India’s disabled children.

Q) Describe for us the current scenario in context to children and disabilities in India.

A: According to WHO (2018) data, the prevalence of hearing impairment (HI) in India is around 6.3% (63 million people suffering from significant auditory loss). The estimated prevalence of adult-onset deafness in India is 7.6% and childhood-onset deafness is 2%.

Hearing loss is identified in about 3 in 1,000 new-borns and by the time the child is ready to start school it increases to about 1 in 300 children. This increase can be attributed to a range of factors including (1) failure to detect at birth (2) progressive hearing loss in either or both ears or (3) trauma, infections, etc.

Hearing loss is often treated as a ‘low-profile’ disability as it cannot be seen or easily identified, thus resulting in low awareness. Commonly referred to as an ‘invisible’ condition, the most credible approach to ensure that children suffering from hearing loss can be identified and treated at an early stage, is to get every new-born screened for possible symptoms at birth. Implemented across most developing countries, the Universal New-born Hearing Screening (UNHS) is a medical test for early detection of congenital hearing loss, to manage the condition in an effective way.

According to the World Health Organization (WHO), 60 percent of hearing loss in children under 15 years of age is preventable. Unless intervened, hearing loss in early childhood has direct impact on communication, literacy, learning, social & emotional development, educational attainment and future employment opportunities. Children who are identified and receive appropriate intervention early are more likely to demonstrate language development within the normal range by the time they enter school.

Over the past two decades, dramatic improvements in hearing screening technology have significantly lowered the age at which children with hearing loss can be identified. However, there is lack of awareness of the interventions and services available. At the same time these services and surgical interventions are expensive for people from less privileged background, lending to the numbers in India.

Q) Tell us about Program Dhvani and why it was conceptualized. How does this program fulfil the gaps in the system (for children)?

A:Lack of services of mandatory new-born hearing screening and delay in the identification and treatment of congenital auditory impairment can adversely affect the quality of life, in terms of language acquisition, social interaction, and emotional development, education, and employment prospects of children in their later years. There is an urgent need to sensitize expectant parents and families, family doctors, pediatricians and gynecologists to strongly recommend a neonatal hearing screening for every new-born.

Save The Children India has been running a Special School for children with hearing impairment for the last 30 years. However, over a period of time it has been realized that by the time children are enrolled (at the age of 5 and above) in the Special School, the critical period of their development is wasted. By then children already develop their own sign language and signing system to communicate despite having the potential to develop spoken language and verbal communication skills. This condition then becomes difficult to reverse. But if hearing loss is detected and intervened at an early stage, these children can develop speech, language and communication skills naturally.

Recognizing this need, we initiated Dhvani in 2010 – an early intervention centre for children from all strata of society. Dhvani provides easy access to valuable services of testing and early diagnosis, treatment like cochlear implant, counseling, training, amongst others, that can help transform the life of the hearing-impaired children.

Q) Program Dhvani uses state of the art technology to provide a more holistic service for children. Elaborate in context to technology used globally.

A: Dhvani provides a bouquet of solutions and services to fulfil the needs of children with hearing impairment under one roof. It strives to develop communication skills of hearing impaired children at the foundation stage so that they can be mainstreamed into society. This is streamlined by the use of new and effective tech at every stage in early intervention.

For early diagnosis, we use modern day technology like audiological equipment and sound proof rooms, accurate audiological evaluation and comprehensive audiological test battery that include Infant Hearing Screening Program (using OAE/AABR techniques), Pure Tone Audiometry (AC/BC Unaided/Aided), Tympanometry, Speech Audiometry (Unaided/Aided), MAPPING & trouble shooting of hearing aids and speech processors, CI assisted audiometry.

For early amplification, once diagnosed as having hearing loss in either or both ears, and after consulting with ENT specialists he/she will be fitted with good quality digital hearing aids. Additionally, under early intervention, we provide access to qualified & experienced auditory verbal therapy specialists who conduct individual therapy sessions & follow globally accepted auditory verbal therapy approaches. Dhvani uses standardised guidelines & principles coupled with scientific diagnostic methods to emphasize on listening and speaking naturally.

A more holistic approach for the progress of children with hearing impairment includes, early implantation, pre- and post-cochlear implant management for those children who are not showing desired progress. Counseling for parents, family support and guidance for caretakers of hearing impaired children is a key function to ensure an improved ecosystem of care. Experienced special educators assist parents on the selection of the school, medium, board, etc., through Dhvani’s School Readiness Programme on an individual and group basis, that helps children with their overall education.

Q) How do you integrate different stakeholders in creating a conducive environment for children? 

A: 1. Parents & Family: For any successful intervention, involvement of parents and the extended family members is very crucial. Dhvani follows the proven best practices of Auditory Verbal Therapy through customized plans and sessions where parents are partners in this journey. 

2. Professionals: Dhvani involves other professionals for comprehensive evaluation of children. It works towards creating awareness about hearing impairment and its effects on early childhood development. Dhvani invites and seeks opportunities to train professionals through various workshops.

Q) Why is mainstreaming of disabled children important at an early stage?

A: The purpose of mainstreaming is to help children with hearing impairment adjust to being with their normal hearing peers and to help them adapt to the demands of a regular-education in the classrooms. It also helps students follow the same curriculum as non-disabled peers, equipping them access to the same opportunities in the future.

It teaches all students compassion, acceptance, collaboration and patience – life-long skills that will better prepare them for the future.

Q) What remains to be done in relation to policy and law? 

A: There is a lack of public awareness about hearing impairment and its treatment in general. Infant hearing screening needs to be made universal/ mandatory through policy and law.

Q) What do you believe are gaps in the current context? 

A: There are multiple reasons for gaps in the current context. From over population, limited number of trained professionals, lack of awareness on the specific issue, lack of standardized protocols for management of children with hearing impairment by parents and professionals, lack of early detection facilities and limited access for majority of the population, to name a few.

Q) If Program Dhvani were to scale, which issues in particular would it advocate at a national level? And how?

A: Program Dhvani aims to make New Born Hearing Screening mandatory at a national level. We aim to advocate for this by conducting free Infant Hearing Screening Camps during the first week of every month, by promoting our programme through partnerships with various organizations, creating awareness through community outreach programmes and campaigns and conducting regular workshops for medical and non-medical professionals.  

Q) What are the long-term aspirations for Program Dhvani?

A: The aspirations of Dhvani is to keep in mind the engagement of key stakeholders, access to basic services for children with hearing impairment, and scaling up to reach more children.

From 2020-2024 we aim to have infant screening in place, expand our geographical reach in Mumbai and Maharashtra, undertake training for parents and professionals to build a conducive ecosystem for children with hearing impairment and a hub that allows for the convergence of the best services and practices for effective early intervention.

Our impact: 5000+ infants will be screened for hearing impairment, 1000 Pre-School children will be screened for early childhood/ acquired hearing impairment, 100% mainstreaming of children into reputed schools in Mumbai, 200 children will benefit from the overall program, 300+ doctors and healthcare professionals will be trained through online training courses and we shall conduct 30 camps for public and community awareness.

Q) Share with us a story of a child who was mainstreamed because of Program Dhvani.

The story of Aariz is best told through his mother’s words.

My son Aariz was born on 6th November, 2012. When Aariz was 15 months old, we took him for a vaccination. The doctor asked me how many meaningful words he could speak. We responded saying he was just babbling, and spoke no meaningful words at the time. She displayed suspicion about Aariz having a hearing impairment. But we never felt this, as Aariz was responding to some sounds. The pediatric then advised us to get few tests done. The results were a big blow to me and my family, and my fears had come true. It was difficult to accept that Aariz would not hear and speak like us.

Our disbelief and disappointment, led us to undertake the tests again at several hospitals, hoping that the report would be negated. Unfortunately, all the reports from different hospitals matched, leaving us shattered. Aariz was diagnosed with severe bilateral sensorineural hearing loss.

We had no idea what this meant and what we would do. How would Aariz survive with his disability in this world? This thought would keep my husband and me up all night. We would sit together and cry, praying to God for a miracle.

On a consultation with Dr. Milind Kirtane, he advised us to visit Dhvani at Save The Children India. In August, 2014 we started Aariz’s audiology and language therapy sessions. Soon after, when Aariz was almost 2 years old, he was fitted with hearing aids. I still remember the day my child heard sounds for the first time! Our first session was fantastic and a real breath of fresh air. With the help and encouragement of the passionate staff and specialists at Dhvani, their advice and the resources at the centre, we immediately felt like a part of Dhvani who were on a journey to get my child to listen and talk. Aariz would get excited when he knew it was time for therapy at Dhvani. 

After 3-4 months of getting his hearing aids, Aariz started getting used to various sounds. A play way method was used during the training and language therapy started in English. Aariz was encouraged to vocalize and slowly he started listening to various sounds. He responded well and started making quick progress. Gradually, Aariz started talking in one word utterances and we were on cloud nine hearing our child speak. By the time Aariz was 3.5 years old, he was able to speak in simple 3 to 4 words sentences. At that time, we enrolled him in a preschool. Aariz was quick to learn different concepts and he made overwhelming progress. 

Today, Aariz is 7 years old, goes to a reputed regular school. He is doing quite well and participates in poem recitation, sports, dance competitions. etc. without any fear, just like other children. He loves reading books. He writes well and is showing remarkable progress in academics. He has interest in sports, he goes to skating, drawing and craft classes. His confidence level has risen.  He can now listen like any other child of his age and speak clearly and confidently in long sentences in Hindi as well as in English. He comprehends complex commands and can effortlessly carry out story narration. Everyday Aariz learns new things and shares it with me. 

I cannot be more proud of my son overcame who translated his disability into his ability. My family and I are over the moon. Though the initial journey was tough, our family is blessed with a very supportive network of friends and of course everyone at Dhvani. Now, I feel I have gained experience to help others who are in the same position as Aariz and I were once in. This has motivated me so much that I have enrolled for a special education course, to help other children too.

I hope that Aariz’z story will spread awareness about early identification and intervention so that every child with hearing impairment can achieve successful inclusion in society. I also hope to motivate parents to work harder and provide good home training for their children since the rehabilitation of children with hearing impairment is a long-term process.