Kerala shows the way with guidelines for special needs' therapy centres

While one in 59 children are diagnosed with autism spectrum disorder, there are more and more children who are being diagnosed with delayed speech, social and communication disorders, intellectual disabilities and neuro development.

With the rising demand, therapy centres are mushrooming across the country. In the wake of such growth, there is a need to regulate such centres to protect the interests of children with special needs.

“We come across many (therapy centres) which do not have qualified practitioners. Some do not have the required space, numbers of experts or facilities,” says V Jayanthini, a renowned child psychiatrist in Chennai.

“A regulatory mechanism would also help the centres when any problem arises. They must have records and proof of meeting the necessary requirements, like in Western countries. These countries have a framework that dictates the desired ratio of therapists to children, the space, first aid needs, facilities and equipment, etc,” Jayanthini said.

It is in this background that the Kerala government recently brought a set of guidelines for therapy centres.

A result of five years of struggle, propelled by a public interest litigation, the draft guidelines, Minimum Standard guidelines for registration of therapy centres, which will come into effect from 2020, not just aims to regulate centres, but also empower parents of the children with special needs.

The guidelines follow sections 60, 50 and 51 of the Rights of Persons with Disabilities Act 2016.

It requires all practitioners or therapists in the centres — speech, occupational, physio-therpaists, rehabilitation and clinical psychology — to be brought under the ambit of a government authority.

Currently, only Delhi has an Act that regulates physiotherapists and occupational therapists.

The movement

Talking to The Federal, Seema Lal, co-founder of Together We Can, a movement that was s instrumental in getting the guidelines passed by the state government.

“When I began focusing on mothers, they had many horror stories to share with me about incidents in therapy centres. Moreover, the case of a six-year-old who broke his arm during therapy was the final trigger to work towards this,” she said.

“I also realised that we have a diagnostic model being practised in therapy that leaves parents grappling for help after their child is 15 years. They need to know how they can help the child in a home setting to improve the quality of life,” she explains.

The guidelines also aim to bring together different kinds of therapists under one authority unlike earlier when different therapists came under different bodies.

The guidelines require every district to have a committee monitoring therapy centres under the Social Justice Department.

It requires the centres to display the qualifications, fee and other details of services and therapists in order to stop exorbitant charging and unqualified practice.

Keeping parents in loop

“More importantly, parents will have to be present during sessions. The guidelines also stress the need to empower parents of these children,” says Lal, noting that therapy sessions are seen as respite time for parents even while therapists can be irresponsible.

Vanitha Krishna*, mother of a four-year-old child with development delay, was puzzled by her child’s behaviour. He kept hitting himself on his head, but he also communicated in few words that he was being hit by someone. The parents soon figured out that he was talking about his therapy sessions. When she checked with the therapists at the centre, they told her categorically that they do not beat children.

“How do we believe them?” she asked. “We are not allowed to see the therapy sessions and our children and therapists are locked up in a room for a fixed amount of time as part of therapy.”

Therapy centres say parents are kept away to ensure that children do not get distracted.

Nandini Santhanam, co-founder, The Lotus Foundation, a centre working with children with autism, said children mostly behave erratically in front of parents.

“Also, therapy activities involving the body may look painful to the observer but may be needed for the child for effective integration of his body-mind connection,” she said while admitting that all therapists may not have ethical moral values.

“They may abuse the child or may not do the therapy activity that they are supposed to do, in which case secrecy becomes necessary.”

Santhanam however observed that the government should also lay down specific practice guidelines for each therapeutic activity.

“Before such guidelines can be laid out, it is important to have an independent board to issue licences to practitioners. Without licensing, guidelines alone are not of consequence,” she said calling for country-wide regulations.

“A central body which takes care of the interests of the people with disability will be able to govern and implement better than state-wise programmes,” she said.