On World Human Rights Day and the day after World Patient Safety Day, TogetherWeCan and PatientsEngage would like to bring the focus on safety of children at therapy centres. Despite an ongoing petition in Kerala since 2015, progress has been slow. Why is a child's right to safety not a priority? In light of a couple of recent incidents, we bring you an update on the petition on therapy centre regulation by Seema Lal.
In October 2018 the following incident happened in a government therapy center. Reproduced below is an abstract of the English translation of the letter by the mother of a child on the autism spectrum to the authorities
My son __ is autistic by birth. I have been taking my son for therapy to the autism centre under ____. __ teacher used to train my child there. Though my son was showing progress on a small scale, I used to be apprehensive about this person’s approach to the children. Because, when I was taking him there, I had noticed this teacher many times, behaving unsympathetically to other children. I had talked to her about it and she had been justifying that these are all ‘ part of therapy’. When I went for therapy last Monday ( 29/10/2018) afternoon, I handed over his lunch to the teacher. While this person was trying to give him lunch, he refused. This person was forcing him to eat.( He always takes food items like appam, dosa etc because these children do not like to touch sticky food). Though he was asked many times, to have his food, he was not ready to eat. In the midst of this, scolding and physically forcing him to eat also were going on. The child was crying uncontrollably and in the commotion that followed, the lunch box fell down and the rice was scattered. The teacher angrily shouted “ I will make you eat the rice from the floor”, gathered the rice from the dirty floor and forced it into the child’s mouth and made him eat it forcibly. I, who was watching all these, tried to go to my child, but the other teachers did not let me go near my child. Another teacher was telling “ Teacher, give him my food, it is on the table”, but this person totally ignored it and continued the cruel actions. The teacher was doing this to an autistic child who is disabled, speech impaired and without special intelligence. All the while, though I saw that my child was crying pitiably , I could only helplessly watch without being able to help him in any way. It was a heart -breaking sight for me. And also, without uttering a word, I had to leave the place heartbroken. When I enquired about this to other mothers, I came to know that such cruel incidents are common here, and the parents are being silent because they want to continue getting the services offered here. If I keep silent, I will be doing the greatest mistake in my life which will remain an unhealed wound in my mind and that is why I am taking an initiative in this. That day itself, my son developed fever and vomiting. We showed him to a doctor of our acquaintance, and he suspected stomach infection. My whole family was totally shattered by this incident and had taken the decision that he need not be sent to this centre again. But I was perturbed by the thought that many autistic children like my son would be abused like this or in any other way. As a mother I am strongly convinced that such cruelty should never be shown to any child by any teacher and hence I am going ahead with this complaint.
A mother named ______ staying in Vazhuthacaud, had her autistic daughter beaten and bruised in this centre and she had to start her own autistic centre. I was a witness to her public speech regarding this in Sai gram in Attingal. All mothers may not be able to start autism centres of their own, like this mother. For people like me and other families who are economically backward, these govt autism centres with multidisciplinary approach (speech therapy- physiotherapy- psychotherapy- special education ) are the only support. We need the govt’s help to develop these centres in a positive way and run them in a good manner. I want to tell you humbly that such teachers without patience and conscience are not ones needed for such model centres.
In September, another parent wrote in the following complaint:
On September 4th , as usual, I took my 10 year old son who is, by birth, autistic and speech impaired, to the above centre. My son was being given training by ___ teacher. That day, seeing that he was not writing, ___ made him stoop down and kept the notebooks on his back. Another teacher who was watching this kept a pencil box also on top of the books. Then another teacher was saying “Teacher, is a class being taken here for the Union of Loading and unloading workers !!” Saying this, they laughed and were making fun. Then using a steel scale, beat my child. When it pained him, he caught hold of the scale. The teacher got angry and beat him on the other hand till the skin ruptured. He started trembling with fear. Seeing that he was still not writing , the teacher, overcome with anger, went to the toilet inside and brought a big PVC pipe kept near it and beat him black and blue. My suffering son ran to the cabin where the balls were heaped and stood there looking at me helplessly. I was unable to react and went numb on seeing my son’s plight….. And they claim that these are all part of training. When I reached home, I looked at the tender hands of my child. What we saw was heart breaking to my family. His hand had become swollen and he was unable to move them. He started crying loudly and was unable to sleep the whole night. The next day morning, we had to take him to the doctor for consultation..
Unfortunately, these are not isolated incidents.
In March 2015, Preetha Anoop’s son who is on the autism spectrum fractured his arm during his occupational therapy session.
Seema Lal, a researcher and child rights activist was convinced that a child’s safety came first and filed a petition to Kerala State Child Rights Protection Commission in April 2015 and started the forum TogetherWeCan along with other parents Anita Pradeep, Preetha Anoop Menon and Padma Pillai.
Progress on the petition to date:
After the first petition in April 2015 and umpteen other emails, phone calls, meetings, video campaigns and support from across country KeSCPCR passed order in favor of TWC on August 2016. The following is an extract of English translation of the Malayalam original .
10. In light on the facts discussed above and in accordance with Child Rights Protection Commissions Act of 2005, Section 15 (1), the following recommendations are being ordered.
(a) All special needs rehabilitation centres working in Kerala, should get registered according to Kerala Municipality, Kerala Panchayat Raj (Registration of Private Hospitals and Private paramedical concerns) rules, under the connected Local Self Governance Centres and Parties 1,2,5,6 should ensure that no organization works without the said registration/licenses.
(b) Parties 1,4 in consultation with experts in the field and parents of special needs children, should formulate detailed guidelines for the functioning and activities of Rehabilitation (Therapy) Centres and roles and responsibilities of concerned officials and authorities. The said guidelines should be prepared and circulated to all rehabilitation centres functioning in Kerala, within a time of 3 months.
( c ) The guidelines prepared as per instructions above should, adhering to the current rules and regulations, specify procedures for - Registration of Rehabilitation Centre, Code of Conduct for the organization and staff, Minimum Qualifications required for therapists and rehabilitation staff, Rules and regulations to be adhered to, how the organization should function, timings, child friendly infrastructure and other facilities to be maintained and also should nominate authorities who should audit and ensure implementation of these guidelines.
(d) As and when the guidelines are prepared in accordance with the existing rules and statutes, it should be ensured that all existing practitioners and therapists who work in rehabilitation and therapy, should compulsorily get registered with the authorities decided by parties 1,4 and before the date specified.
A PIL by TogetherWeCan was filed since the above was not executed in the 3 months stipulated. In Sept 2018, there was a court order which took into account concern of the petitioners on the vulnerability of children on the autism spectrum and directed that guidelines be formulated within 3 months to ensure that certification and registration of therapy centres should be in accordance with Chapter IX of the Rights to Persons with Disabilities Act 2016.
What is sorely needed are the following reforms in the way 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 the 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 a 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 parents are the best therapists. Remember that together we can open doors to a safer future.
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.
The objective of this petition is not to close down therapy centres. It is to enable a properly regulated environment which ensures therapy happens in a safe environment and allows parents to participate. In fact in many countries, parents are strongly encouraged to be present so they can follow through on the therapies at home as well.
As a parent of child who needs therapy, ask for the changes in your own centres. File a petition if need be.
Make safety of your child a priority.
