Minimum guidelines to be issued to Private Therapy Centres offering rehabilitation to Autism and other neurological disorders in children

May 19th, 2015

Ernakulam

To,

Mr. M G Rajamanickam IAS

The District Collector

District Collectorate, Kakkanad

Kochi - 682030

Subject: Minimum guidelines to be issued to Private Therapy Centres offering rehabilitation to Autism and other neurological disorders in children.

Reference: Meeting on 16th May 2015, on the subject

Respected Sir,

Our heartfelt gratitude for extending a warm and patient hearing to us on the 16th of May, when we met you to discuss the various malpractices and the subsequent trauma and damage caused to children with autism and their parents.

As you had instructed, we have prepared a list of the minimum guidelines that these centres need to be subjected to, to ensure a free and conducive rehabilitation environment for these children. We have attached the same as Annexure-1 to this letter. 

You had instructed us to prepare a comprehensive list of therapy centres and special schools who work in the city. Since they do not come under a single regulatory authority and are also registered under various heads, preparing a comprehensive list is beyond the capabilities of commoners like us. We have attached a sample list which contains the names, addresses and phone numbers of a few therapy centres, hospitals and special schools that work in the field of developmental disabilities. We pray your esteemed office to kindly accept this limitation of ours.

Together We Can (TWC) is an advocacy group formed by parents of autistic and developmentally disabled children, with active help from a few professionals who work with our children. Our goal is to be a parent support group which raises and pursues issues that concern the health and wellbeing of our children. The current spate of accidents, abusive and restrictive practises and the complete apathy about the overall development of the child, are what had driven us to beg your indulgence.

We look forward to your kind consideration and positive action.

Sincerely

Team Together We Can

ANNEXURE - 1

1. Bring all private therapy centres offering Speech Therapy, Special Education and Occupational Therapy to Autistic children, under a single regulatory authority. Currently they are either:

1. Registered as Charitable societies
2. Part of a hospital, attached to the developmental podiatry or psychiatry wing.
3. Attached to a psychiatric/paediatric clinic
4. Attached to a special school, where children of all forms of developmental disability study.

Since it involves the education of children under the age of 15, the centres ideally should be affiliated or approved by the Ministry of Education, the DEO locally.

2. Issue a directive to all institutions offering rehabilitative and other therapy to children with dev. disabilities to make it mandatory that the parent is present with the child 100% of the time, including when therapy sessions are being undertaken.

1. In Kochi, the parent is not allowed inside the therapy room in all cases and for the entire time.
2. The autistic child, who cannot communicate and has social anxiety and sensory disorders, is unable to inform the parent about what happens inside the closed room.
3. Instances of abuse have happened in various centres, where the children have been slapped, pinched, physically restrained, locked in a chair etc.
4. There have been case of teenage students becoming pregnant, at special schools.
5. The parent/primary caregiver, is the only person the child feels safe with and who can understand the signs of distress in them

3. CCTV to be made mandatory in all therapy rooms. The onus of keeping the CCTV in working condition, recording the sessions and keeping the footage for at least a year, should lie with the therapy centres.

In case of disputes or allegations, it is imperative that recordings be produced since the child cannot communicate well. The centres’ complaints about the parents’ behaviour also should have supporting video evidence.

4. Appoint an audit team under the regulatory authority or DEO, which constitutes psychiatrists, development psychologists, experts in special education and parent representatives, to periodically audit therapy centres and to offer new insights.
1. To ensure that an Individual Education Program (IEP) is made available to each and every child under therapy, like a lesson plan is, in schools. Parents should be educated about the program and guided about the methods.
2. Special Schools which are currently run like glorified daycare centres, have to follow the norms of normal schools for lessons, physical activities and extra curriculum.
3. Qualifications of every professional who comes in contact with the child, have to be benchmarked and audited to prevent malpractice.

5. Under the aegis of Sarva Shiksha Abhiyan and the Child Development Centre various Autism centres and therapy facilities function at Govt. Schools and Hospitals. They are critically understaffed, sometimes in unsafe environments or lack materials and infrastructure.

1. Therapy at the private institutions referred above charge from Rs. 250 to Rs.500 an hour, depending on the qualifications of the personnel and the needs of the child. This is unreachable for the many thousands of middle class and lower class families, who are also victims of this endemic.
2. Government LP schools, who admit autistic children under the RTE act, do not have qualified teachers, special educators nor access to psychologists who can help them develop a program for the child.