Cochlear upgrade gets funds. But what about 37 kids who had already gone deaf?

Finally, after almost a year of inaction, Kerala government has sanctioned Rs 59.48 lakh for cochlear implant upgradations. The July 22 decision will benefit 25 hearing-impaired adolescents and teenagers whose devices have become obsolete.

However, all these 25 beneficiaries had done their cochlear implant surgeries before February 2012, when 'Sruthitharangam', the government project to provide cochlear implants to poor children, began. For children who had the surgery after 2012, assistance is not available.

Official logic is that those who had done the surgery before 2012 had done it with their own money and, therefore, required immediate assistance.

However, even senior officials at the Kerala State Social Security Mission (KSSM) are aware of the folly of such a differentiation. Ideally, no hearing-impaired child should wait indefinitely to get her device upgraded.

Out of hearing, out of sight
Even among those who had surgery after 2012, there are 360 children whose devices have long become obsolete.

From 2022, all the major implant companies chosen under 'Sruthitharangam' have stopped the production of models used for the scheme. MED-EL stopped Opus-I in March 2022. Advanced Bionics stopped its Platinum version in March 2022. It killed its Harmony and Nuclear versions in March 2023. The company called Cochlear will stop its Freedom-variant this December; when this happens, the devices of over 500 children would become outdated.

This means that if any part of their external device (battery or headpiece or even the coil that attaches the processor to the headpiece) malfunctions, the children who have the implant will immediately go deaf. Neither can these parts be purchased nor will the company service them.

Already, according to figures collected by Cochlear Implantees Association and Charitable Society (CIACS), 37 children with implants in them have gone deaf because a part or parts of their external device had crashed.

Anseel, aged 15, is one of them. With no means to upgrade, he has been deaf for three years.

For Anseel's fisherman father to fund the upgradation on his own would be unthinkable. It costs between Rs 3.5 to Rs 7.5 lakh. Children on whom cochlear implant was done under 'Sruthitharangam' come from families with an annual income of less than Rs two lakh.

Dangers of relapse
To keep these children away from the world of hearing is to let regression set in.

"We have been told that our children should not be kept out of the world of hearing even for a second. If they stop hearing for long periods, these kids will lose the ability of speech they had developed after long hours of therapy," said Abdul Rasheed, a father of a hearing-impaired girl and the treasurer of CIACS.

There was a time, for instance, when Anseel was able to communicate just like any other normal kid. Now, three years after he returned to silence, Anseel has severe speech difficulty. He can no longer form words, he can make only sounds.

A sound fund-sharing model
In fact, the LDF government in 2018 introduced an effective way to fund the upgrade. Each local body was asked to set apart Rs 50,000 annually for each hearing-impaired child within its limit. If there were four such children, the panchayat had to keep aside Rs two lakh.

All this money was pooled together in a single chest by the Kerala Social Security Mission. Money was distributed on a priority basis from this common pool.

"We felt this was a nice arrangement. Because one child might just want a coil that costs less than Rs 1500 or a battery that costs Rs 11,000 but another would want a processor that costs upwards of Rs 3 lakh. So even if a child who wants a new processor belongs to a panchayat that has set apart only Rs one lakh, it would not be a problem. Thus, fund shortage was never a problem," said Najmudheen M K, a father of a hearing-impaired child, and also the vice president of CIACS.

Death of the model
But such pooling also meant that all the money that one panchayat had allocated would not go to their children.

"The local body representatives felt that the Social Security Mission was cornering credit with their funds. Since the funds are disbursed by KSSM, they also found it hard to claim patronage," Najmudheen said.

As it turned out, local bodies stopped setting aside funds for hearing-impaired children.

"If the government issues an order asking local bodies to mandatorily allocate annual funds for hearing-impaired kids, I think the problem could be solved," said Navas N K, the president of CIACS.