Anagha Vishakh
Imagine the plight of a mother, waiting outside a therapy center for her non-verbal child with autism only to see that his hand is broken when he comes out. He has to be rushed to the hospital. But no one has a clue about what happened behind closed doors where professionals claim “therapy” happens. You and I wish this was a fabricated story. Unfortunately, it’s not.
“I’ve worked with children with disabilities in rehabs, special schools and mainstream schools too. And I noticed how the therapies are very medically modelled, focusing mainly on how to cure and correct the disability, failing to understand that what is needed is not correction, but an alternate learning process. Leveraging on the strengths of the child and not on their “disability”, and offering new learning tools to channel those to help lead a functional life, is what is needed,” says Seema Lal.
The focus of the centers throughout the country is centered only on the children with the disorder, and does not include the family, who play a vital role in helping the child navigate life. After years of working with families and children, Seema believes that family plays the most important role in shaping the child’s world and skill development especially in the first, most crucial, 10 years of development. While anything and everything is marketed by adding “therapy” after any word, these helpless parents are led to believe that that’s what is best for their children and pay up.
“A lot of mothers and parents came forward asking what they can do, how they should be doing it and I realised that these therapy centers are not parents inclusive and that they happen behind closed doors with no CCTV cameras or one-way screens. Over time, these concerns took an abusive nature and I do not mean just sexual―they were mental, physical and financial,” Seema Lal explains.
Parents were helpless when they realised that not only were they clueless on how to help their child, but their children were going through abuse in the name of “therapy”. They couldn’t do anything about it as many children with autism have sensory issues (sensory seeking or avoiding) and often cannot distinguish between a good touch and a bad touch. Even when they do, they do not have the sufficient communication to let their parents know, seek help or to react to the abuser.
“We are talking about therapists who have been working with these kids for long having experience with children with autism, it’s easier for them to access and manipulate the situation to their advantage. The kids are in such a vulnerable place with an adult trainer inside a closed room which is illegal.”
Under medical ethics, a medical doctor will not examine a child without the presence of the guardian or the parents. No such ethics or best practice guidelines are laid down in such therapy centers and this is what TWC wants to bring about, a regulatory board, which includes parents, to examine the therapy centers in the state to make sure their practices are ethical and not harming anybody.
“It struck me that this model cannot be changed by just talking to the professionals as they were convinced that this was a convenient practice. Including the family was not the goal. We had to do away with the medical way of approaching disability. And when enough care is not given during the intervention stage, we lose out on these kids who eventually have self-regulation issues and we label them as violent and aggressive,” says Seema Lal.
TWC aims to bring about transparency in therapy centers and shift the focus from only the children to their families and empower them so that they can go back and support their children to increase the quality of their lives. “We also want these centers to not just focus on the deficit but also on their strengths and build them, nurture them, balancing both.”
Apart from Seema Lal, the core committee includes Padma Pillai, an entrepreneur and mother of a 13-year-old autistic boy, Preetha Anoop Menon, a lawyer and mother of a nine-year-old autistic boy, and Anita Pradeep, child rights activist, baker and homemaker and mother of a 24-year-old with autism.
Parents need to speak up. There are still some who are scared to do so because either their spouse is in denial of their child’s condition or they are scared if the therapy center might deny help to their child. “We have had mothers creating fake profiles on social media to contact us because their spouse or mothers-in-law are in denial or do not want to get involved in this issue”.
The state government also needs to act on this immediately as there is only one government therapy center in Kochi and they allow only children studying in government schools, thereby denying others who also need it.
Neurological or developmental disorders are hushed up like it is a shameful disease, not realising that it is not a disease, and that children have no choice in how they behave. Would parents try to bury the news of their kid having diabetes or any other physical ailment? Such disorders are as normal as any physical ailment and what is shameful is the stigma surrounding it.
When asked if there is any ideal therapy center that should be looked upon and followed, Seema Lal had something interesting to say. “There is no center I can point to except for our own homes. The ideal care centers are our homes because that’s where kids get most care from. In fact, the parents and immediate relatives are the ones who need professional help so that they can help the kids at home. In short, the ideal care center is home, and the ideal therapist is the parent.”
Over the course of three years since TWC was formed, awareness in parents have increased tremendously. “We thought we were making a change only in Kochi since we started here, but parents from other states and abroad even have contacted us and sent us videos regarding the problems they were facing.”
And with the help of Human Rights Law Network, they filed a petition to Kerala State Commission for Protection of Child Rights in April 2015 and almost after a year and a half, in 2016 a panel of 14 members reviewed the petition and passed an ordeal with recommendations to have district committees, which also includes parents, monitor the working of therapy centers. And to have state level meetings monthly in order to lay down best therapy practices. Unfortunately, nothing came off it. Later in May 2017, they went ahead and filed a Public Interest Litigation (PIL).
“We are not anti-anything, least of all therapy or therapy centers. We are only trying to stop abuse, bullying and exploitation of parents and children with disability. We are FOR a regulatory body, FOR a healthy quality of life for these children, FOR parent inclusive therapies and FOR an inclusive society, is it a wrong thing to be?” Seema Lal asks.
theweek.in/leisure/society/2018/05/25/Together-we-can-bring-transparency-in-childrens-therapy.html
