From a grieving mother to a professional caregiver

It was very difficult for me to accept the truth at first,” said Nethravathi, 28, recalling the first time she was told that her son could be suffering from an intellectual disability. Today, not only does she manage her son Charan Babu, now six, like a professional, she also takes care of several others like him. Charan suffers from 75 per cent mental retardation and has a problem with vision.

It was last November that she began a parent training course at the Spastics Society of Karnataka (SSK). From observation classes to teaching children with intellectual disabilities, she learnt them all, along with 10 other parents. Now, the Class XII pass-out has been hired by the same institute that taught her.

“Earlier, I did not know what to do at home. Now, everything is in order. I have taught him to differentiate between hot and cold, say ‘yes’ and ‘no’. My son is a non-verbal child and everything is by action. He has shown a lot of improvement,” she said. It is very important for parents with children with disabilities like to be trained, she added. At least six people for each child, and at least six children for each specialist: that is the ratio of children with developmental and neuro-muscular disabilities to the resources needed to work with them. With the demand for professional caregivers steadily on the rise, organisations working in the field are seeing a shortage of trained personnel. To overcome this challenge, one option is to rope in parents of such children by training them to manage more than just their child.

Shobha Sundar, head of the Department of Medico-Social Work at the SSK , explained why it was vital to get more caregivers on board. “Each child needs six people to work with him/her, including a doctor, counsellor, speech therapist, etc. Each of these specialists will end up working with nearly six to seven children a day. The manpower demand is huge,” she said.

Increased

awareness

The SSK alone saw as many as 2,200 admissions (of children up to the age of eight years) to its various services last year. But instead of causing alarm, this number, which has apparently seen an increase compared to previous years, actually shows an increased awareness of the facilities available to children with developmental disabilities, said Rukmini Krishnaswamy, Director, SSK.

However, some of these children have to travel long distances to avail these services. Hence, an alternative model of care-giving could prove to be a blessing.

“Children don’t have to come here every day. Parents with certificates in rehabilitation and training could be given the responsibility of opening a unit in some zones. We could go there once a month or/and vice versa,” Ms. Krishnaswamy said, spelling out details of their plans.

With one batch of 30 parents already having been trained, another batch of 25 is expected to be ready in six to eight months. Almost like special-educator training, these parents are being trained for a particular purpose: to be empowered enough to train the others.

“We facilitate parents to understand the developmental aspects of children not in terms of a particular age, but in stages of milestones,” she said.