It’s a free-for-all at therapy centres

8 April, 2018

Sudha Nambudiri

Voices of the marginalised must be heard

The state is yet to formulate strict guidelines for the functioning of autism therapy centres. Following a complaint from a parent’s forum, Together We Can, the Kerala state commission for protection of child rights (KSCPCR) had in a report sought the state health and social justice department’s intervention in bringing minimum standards to therapy centres.

“We have been running from pillar to post to make officials understand that there is no regulation in the functioning of the therapy centres. Though everybody acknowledges the loophole, there has been no action from the state and hence we have filed a public interest litigation in the Kerala high court,” said Seema Lal, founder, Together We Can.

At a recent meeting in Thiruvananthapuram, the KSCPCR called on the state government to ensure minimum standards for centres offering therapy to children and ensure presence of parent/support person during the therapy sessions.

The meeting attended by Ummuselma C, joint director (health), directorate of urban affairs and V S Santosh, under-secretary to government, decided to ask the health department to ensure that therapy centres are included in the newly-approved Clinical Establishments Act According to the KSCPCR report, the local self-government department should frame rules for these therapy centres. At the time of registration, certain standards need to be verified in terms of infrastructure and the qualification of the persons attending to the children.

There must be provision to ensure that parents/support person to be present during therapy. It also sought to look into reasons why block resource centres (BRC) refuses occupational therapy to children other than those who go to government schools.

“We have been petitioning the state governments and the Centre, seeking a monitoring mechanism for institutions dealing with care or therapy for special children. There’s no budgetary allocation and hence nobody wants to consider it. There’s a lot of hatred and abuse in many of these institutions as there are no trained or competent staff. With no monitoring mechanisms, it is a free for all,” said Muralidharan V, convener, National Platform for Rights of Disabled.
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Kochi: Parents of autistic kids on a campaign mode

13 June 2017

Sudha Nambudiri

KOCHI: Frustrated because of their failure to draw attention of authorities to the sorry state of affairs at therapy centres, parents of autistic children have started using social media videos to tell their stories. These parents want to be with the children during the speech, behaviour and occupational therapy so that they can help them.

Roshni and Sandeep Kumar moved back to Dubai from Kochi after the autism therapy centres failed them. Of their two children, their younger is autistic. “We were in Dubai but decided to come to Kochi because there were good therapy centres. We didn't have much knowledge on how to deal with an autistic child. We would sit outside while our child would be in with the therapist. I did not know what happened inside but realised that it is not making any difference.So we came back to Dubai. Here the centres insist that the parent should be with the child for the first one year because the sessions are called Parent and Child Training (PACT).Now my child has progressed and he has become fairly self-sufficient,“ they said through a post on the Facebook page Together We Can.

Anita Pradeep speaks of parental role and the changes it made in her son Brian with whom she spent time in the therapy centres outside the state.

“It is very sad to hear about the closed door therapy sessions here.More than safety issues, parents need training. We need transparency and a regulatory body to oversee what is happening at these centres.“

The videos have gained popularity after the incident at the Palarivattom Daycare centre where tales of abuse of special children also came out. Preetha Anoop Menon in her video talks of how her son. “We couldn't manage him and there was no improvement too though I sat every day in front of the centre while my son was inside. One day we heard a cry during a session.When we rushed in, we saw that his arm was broken. From then on I have insisted on being with him and it has made a difference,“ she says in the video.

Seema Lal, psychologist and coordinator of an informal parents group Together We Can, says that they have been trying for a year to get authorities to listen to them.“We realised that something needs to be done to make the society understand the problems of autistic children. We filed a public interest litigation in this regard recently ,“ she said. Biju Isaac of Autism Club in his video says that sessions in which parents are forced to sit outside are not helping. “If we ask them what was done inside, they don't say because they are poor communicators. Closed door sessions are happening because therapists are not confident about doing it right,“ says Biju.

Fathima, another parent says in a video that it is very important to have early progress. “We are not against therapy centres but without a regulatory body, this is the only way to raise the voice for our own children,“ she said.
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