Lending a keen ‘kivvy’ to community

Young Ved Chikarmane is leveraging his lived experience to ensure people with hearing impairments can access early screenings and affordable care.

For 18-year-old Ved Chikarmane, the biggest challenge — aside from excelling in his board exams — is determining how to ensure that every child across Karnataka has access to early hearing screenings.

Born with severe bilateral hearing loss, which caused him to lose 70% to 90% of his hearing abilities, Ved only began to experience what most of us take for granted — the gift of hearing — after a long battle.

“We had a lot of trouble figuring out what hearing loss was and where we could go to seek support, despite the access we had to experts,” says Ved.

“As I grew older, I realised how blessed we are to enjoy the privilege of hearing. I also learnt that people were getting diagnosed very late and that is when I resolved to make early diagnosis and care accessible to children in Karnataka and India,” he says.

Recognising the challenges that his family faced with diagnosis and treatment, Ved initiated the Kivvy Project in 2021, which aims to become a comprehensive platform for multi-stakeholder collaboration. The website seeks to leverage resources and knowledge to raise awareness about hearing loss, while also championing decentralised, low-cost screening of newborn babies for auditory disorders across Karnataka.

Leveraging his lived experience, he has also been liaising with the state health department and various research institutions, including Dr S R Chandrasekhar Institute Of Speech And Hearing, IIT-Madras, and Sri Ramachandra Institute of Higher Education and Research (SRIHER), Chennai.

Both the current and the former health ministers of Karnataka have extended their support to the cause, after Ved arranged multiple meetings with them to discuss implementing an ‘ultra-low-cost’ screening model, using a device developed by IIT-Madras, backed with training and support from Professor Dr Vidya Ramakumar’s team at the SRESHT-SRIHER India Alliance lab.

Credit: DH Photo

“Existing screening machines are very expensive, the cost of screening each child would be very high, which would only increase the burden on each hospital and they would not be willing to do so,” says Ved, who has visited the IIT-M campus several times to evaluate the machine's viability.

The project is now in its pre-pilot stages, with Kolar district’s health workers expected to receive the devices and the training to operate them by December 15. The goal is to ensure that newborns are screened early for hearing loss and promptly connected to affordable care and support options.

At the same time, he is bringing speech therapists and resources from the AG Bell Foundation and other organisations in India on board and onto his platform, to help parents access information and support. This means that children with hearing loss can be connected with the expertise needed to develop speech and language skills at an early age.

In Ved’s case, the family did not know of his hearing loss until he was about three years old. “He was a boisterous little baby but we could not understand a lot of what he was saying – he was not hitting the verbal milestones he should have. All of us thought he was a late starter,” Deepa, his mother, says.

The family anxiously shuttled from one hospital to another to understand what was amiss. This eventually led them to Dr Prathibha Karanth, speech-language pathologist and founder-director of The Communication DEALL Trust. At the time, medical professionals suspected that he was exhibiting signs of being on the autism spectrum. After ruling out autism, Dr Karanth directed them to the S R Chandrashekar Institute, where he was given expensive hearing aid but verbal communication was still unclear.

Having frequently travelled to New York for her export business, Deepa reached out to her cousin for assistance in obtaining a second opinion. This put the family in touch with specialists. After long waiting periods and several consultations, Ved underwent rigorous speech therapy at the Centre for Hearing and Communication, linked to the AG Bell Foundation, for three months before returning to India.

Ved has since arranged workshops through his school, spoken on panels about hearing loss and awareness, and also delivered his first TEDx talk at age 10 about his experience with hearing loss and perseverance in the face of challenges. He recalls how his teachers at Mallya Aditi International School set up special review classes and ensured that his reading exercises were completed to help him keep pace.

Over the years, Ved began the process of interacting with multiple agencies to form a bridge for implementing early screening and diagnosis, providing access to speech therapy, and generating accessible information in regional languages. “The work I am doing is merely connecting the dots, getting various interested parties onto a one-stop platform.”

Ved aspires to study computer science to develop an AI chatbot that can be incorporated into the Kivvy Project in the future so that families can access tailored speech therapy services in regional languages.

IIT Madras’ tool and SRESHT-SRIHER’s expertise and implementation support to train health workers will drive this initiative. Dr Vidya Ramkumar from SRESHT-SRIHER calls Ved a “passionate, lateral-thinking young individual” who championed the cause of changing the experience for other children with hearing loss.

“A public-private partnership in the disability space in India is almost nil, so in that sense, this is pretty unique. Kivvy supports large-scale implementation of screening and support at the district level in a model that can be replicated. We have already had one round of orientation with the 35 NHM doctors, district level and medical officers,” she says.

Senior state health department officials note that the department first wanted to run a demonstration in Vani Vilas Hospital in Bengaluru on a small cohort and identify if this handheld device was more effective than the existing otoacoustic emission (OAE) testing available across all district hospitals, over 30 taluka hospitals and over 200 PHCs in Karnataka. Now, stakeholders involved are setting up training programmes for health staff to use the low-cost device before an MoU is signed and the pilot is conducted in Kolar.

“There are similar technologies from other institutes and countries. We are examining those technologies as well; a technical committee is looking at all these as the Kivvy Project’s plans fall under the subjective methods of screening. However, we greatly appreciate Ved’s initiative for hearing screening. He has been passionately pushing for this,” said Dr Naveen Bhat Y, mission director of the National Health Mission.