This Group Of Mothers From Kerala Brought In Regulations For Better Treatment Of Autistic Kids
Swarnami Mondal Kerala
July 13th, 2017 / 7:11 PM
In the last couple of days, we all have come across a news that read, a five year-old girl was allegedly raped by her therapist during her speech and language sessions. We hear about abuses happening in close-door therapy rooms but how many of us have ever spoken against it and raised our voices?
Seema Lal, a Kochi-based special educator, psychologist and researcher decided to act against these malpractices in therapy centres. It all began in March 2015, when a six year-old boy non-verbal Autistic returned with a broken arm after his therapy sessions. He was rushed to the hospital and the doctor said something drastic must have occurred that has led to to such severe damage. There was no scope of transparency to understand how the kid broke his hand. After this incident several complaints from parents whose children have gone through the same ordeal came to light.
Seema together with other parents formed the informal group called TogetherWeCan. With the help of Human Rights Law Network they filed a petition to the Kerala State Commission for Protection of Child Rights in April 2015. They moved ahead to the District Collector and Child Welfare Authorities where they were heard and understood, however no action was taken as such cases were not under their purview.
One major question which TogetherWeCan raised in this context is, why aren’t parents allowed inside the therapy room or why there are no CCTVs and one-way screens installed to monitor the sessions of the child? Another question is why there is no accountability and transparency of practices that go in these sessions? Parents could not verify qualifications of these therapists and since most of the children are having speech and language disabilities, they can hardly retaliate. Allowing parents to be a part of the sessions so that these children could be mentored even at home is one of the major areas of intervention that TogetherWeCan was aiming at.
The Kerala State Commission for Protection of Child Rights, (KeSCPCR) took notice of it, and after one and half year of study into the petition they passed recommendations in favour of TogetherWeCan. Yet no action was taken. Later in May 2017 a PIL (Public Interest Litigation) was filed. The recommendations of the KeSCPCR said there should be committees at every district in Kerala which should be headed by the DMO (District Medical Officer). It also said the committee should include parents and it will monitor the functioning of therapy centres. The recommendations also spoke about bringing about best therapy practices and a clear child safety policy. As of now there are no regulatory bodies in the country, which can effectively monitor the functioning of these therapy centres.
Together We Can
Together We Can was started two years back as an online campaign with support from several parents who complained against malpractices in the therapy centers for children with autism spectrum disorder and other neurological disabilities. The other active parent partners are Padma Pillai an Entrepreneur and MBA and a mother of a 12 year of boy with Autism; Preetha Anoop Menon, Lawyer and parent of an 8 year old boy with Autism; Anita Pradeep, Child Rights Activist, Baker and homemaker and parent of a 23 year old with Autism.
The campaign allowed parents to open up and speak about the ordeals that they have faced. They hardly raise their voice against malpractices going on during the sessions since they have to deal with the trauma of diagnosis of a child who has such disabilities. Most of the centres mostly treat children with neurological disabilities following a very medical model. However TogetherWeCan advocates for a more holistic parent-centred approach to management of these disabilities which need need understanding and acceptance. Parents at many occasions have been misled by professionals through fraudulent claims of cure. Many home programs use professional jargon like a medical prescription which would hardly be understood by parents.
Parents are not involved in the sessions as these therapists propagate that only ‘professional’ help would be best for the child. What TogetherWeCan tried to bring about a difference in, is the approach of these therapists towards the parents. “Skill transfer and counselling the parents is of utmost importance as these children need to be trained at home as well. A couple hours in a clinical setting is not enough. Parents need to be empowered. But this is one bone of contention we had to pick with the owners of the centres”. They never wanted parents to be empowered,” Seema said when The Logical Indian spoke to her. During the one of the TV campaigns on Mathrubhumi TV, Health and Social Justice Minister, KK Shailaja Teacher spoke in favour of parents being a part of the therapy. TogetherWeCan gradually gained more support, several parents put up videos openly supporting the cause.
Reforms aimed at through filing a PIL
After filing the PIL, TogetherWeCan aims at bringing about the following reforms in the way these therapy centres function across the country:
- Therapy centre regulation
- Best practices for various therapies for children with neurological differences. These guidelines would include a strict child safety protocol which is as of now non-existent in the country
- Ensuring parent representation in constitution of a district level committee for transparent, community based monitoring of therapy centres.
- Advocating for Govt facilities offering such services and therapies so as to ensure affordability and accessibility.
- Shifting the paradigm towards Parent Empowerment and Home programs rather than “treating” children with neurological differences as affected by a “disease” requiring a “cure.” Therapies are needed to help the parent understand and accept the condition and help them work with their children to make them as functionally independent as feasible.
- Focusing on the therapy goal of bettering the quality of life of the family and not the child alone.
- Mandatory usage of Individualised Education Program templates for seamless continuum of service with guidelines for documentation, a copy of which to be shared with the parent.
- Ending closed door therapy where the parent is kept in the dark on the pretext that the child does not cooperate if the parent is inside. Enough and more empirical research shows that the parents are the best therapists. Remember that together we can open doors to a safer future
When asked how can one mitigate the issues against which Seema is raising her voice, she said, “Parents must be let inside therapy rooms. They need to know what is happening with the child. These centres must send regular monthly reports to monitor the training of the children. Setting up of specific, measurable, attainable, time-bound and relevant (SMART) goals must be the priority. The emotional exploitation of parents should stop.”
For more information, please visit TogetherWeCan
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