Silent pain of specially-abled

A recent CCTV footage exposed the torture of a child at a playschool in Kochi, thanks to the conflict between the proprietor and her employee. But not every child, savaged by caregivers, is fortunate. The world seldom gets to know what happens to special children, the most vulnerable and exploited lot because they can seldom express their trauma. There was uproar over the news of a 16-year-old special child being assaulted with a cane by a male warden and beaten black and blue blindfolded by the headmistress of a Kochi-based residential school for special kids. Parents of special children, under the banner of ‘Togetherwecan’, a Facebook group, has been campaigning against the illegal and inhumane practices at numerous private therapy centres – of which there is no record – which offer speech and language, behavioural and occupational therapies and special education classes.

The parent advocacy group filed a public interest litigation at Kerala High Court on May 2 demanding among others standardisation of therapy for neurological disorders by introducing a syllabus, formation of a regulatory authority to check malpractices and transparency by letting the parent in the therapy room. A viral Facebook 10-minute video posted by Ms Padma Pillai, entrepreneur and the mother of a 12-year-old autistic boy, sheds light on the motive of the parent advocacy group which wants to protect rights of the children who are unable to express themselves. “All parents who have taken their children for therapy have had bad experiences at therapy centres. Children are being verbally and physically assaulted behind closed doors. Parents are not let in, claiming that children would not cooperate. As long as children can’t communicate what transpires in the room during sessions that last around an hour, no action can be taken. Though the district collector suggested installing CCTVs in rooms, many were not willing. We also talked to special educators and found that the claim about children being non-cooperative is sham. We won’t, any more, let rights of their children be violated,” says Ms Pillai.

This is not an overnight development. There have been many instances of special children being tortured by inexperienced therapists. In 2015, Ms Preetha Anup’s six-year-old autistic son suffered a fracture at a therapy centre in Kochi. The mother waited outside the room during occupational therapy sessions, little realizing that her child was crying. Only when his arm was fractured did parents realised the torture he was subjected to. “My child had to be operated as his arm was broken. The most shocking response was from the head of the centre, an occupational therapist, who claimed that the child had lesser bone density. We did tests and confirmed that there was nothing wrong with his bones. It never occurred to us that the child was being tortured when he appeared exhausted after each session and kept crying. We were told that it was normal; we didn’t realise we were being cheated,” Ms Anup says.

More shocking was when they learnt that it was a physiotherapist, who handled the occupational therapy session that went awry. However, they didn’t sue the centre because by the time they gathered the strength to speak up, it was late and there were no chances of presenting evidence. Togetherwecan, in 2015, brought the issues to the attention of the Kerala State Commission for Protection of Child Rights, which checked the centres, reviewed the complaints and listed out recommendations, including laying down best practices, setting up district-level panels of experts and parents, setting guidelines for therapy centres and bringing all those under a regulatory body. However, the recommendations took two years to get printed as an official order, which is yet to be implemented.

‘Parents are often ignorant, scared’

Many parents, most of them on condition of anonymity, share their bitter experiences and unending shuttling between therapy centres unsure of the best chance for their child to become less dependent on others. “Many are unaware of the proper therapy practices and therapists don’t brief them properly. The helplessness and ignorance of parents are being exploited to the core. They don’t protest fearing rejection and isolation at the centres, faced by many who dared to. Also, there are no ways to know if they are approaching a bogus centre. There is absolutely no monitoring,” says Seema Lal, psychologist and petitioner, who filed the PIL.

Ms Lal had to bear the brunt for participating in the parent advocacy programme against malpractices and filing the PIL by facing a smear campaign on social media for ‘defaming’ occupational therapists. “These are genuine demands. We don’t want to tarnish any particular centre. There should be a government alternative to private therapy centres,” she adds. Health and Social Welfare Minister K.K. Shylaja said strict action would be taken against perpetrators and that only the service-minded should step into the field.

However, Seema has a different opinion, “They need not be service-oriented. They can make money, but they should do their job properly. Do the therapy correctly and guide the parents along the right path. Focus on home-based programmes by involving parents and equipping them to handle their kids instead of misguiding them stating that only therapists can help the children. Parent empowerment is the need of the hour. Instead of begging for mercy and attention, they need to realise that therapy and education is the right of their child.”

- Seema Lal, psychologist

‘Transparency is need of the hour’

Mr Joseph Sunny, occupational therapist and director of Kochi-based therapy institute, Prayatna, says transparency at sessions is a must. “Despite our state leading in health sector, early intervention therapy is not given due importance. The only government centre that offers paediatric occupational therapy in the state is Child Care Centre at Thiruvanan-thapuram Medical College; the rest are private institutes. “We need taluk and district-level centres. Many can’t afford private therapy. At our centre, we offer up to 50 per cent concession for the deserving, but that’s the maximum. We too need to pay our professionals.” Mr Sunny, also the president of the State branch of All India Occupational Therapists Association, feels it is high time the state government constituted a council to regulate therapy professionals.

“Priority should be given to the panel for therapists than centres. Qualified practitioners lack a regulatory body in the state. Outside Kerala, if any malpractice is brought to notice, strict action like derecognition takes place. Our association is doing its bit by collecting details of occupational therapists working in Kerala. “Sadly, owing to malpractices of a few, everyone gets branded. There are hundreds of dedicated therapists, but due to isolated cases, everyone’s reputation is tarnished,” he rues.

- Joseph Sunny, therapist