Parents of special children open up on therapy centres

21-May-2015

Sudha Nambudiri

KOCHI : Emboldened by the district collector's decision to take action against illegal therapy centres for special children, parents have started posting horror stories of their personal experience on the 'Together We Can' Facebook page.

Parents, who were earlier scared to divulge any details, have started discussing issues and experiences on the page.

Writes Padma Pillai on her visit to a therapy centre along with other parents: "Run by an Occupational Therapist man and a lady who has previous experience, the OT man also claims he has found a cure for autism using acupuncture (without needles!). He started off by saying, they do allow parents inside and keep the door of the therapy room always open (ha!!) and that parents are welcome to walk in any time. The first 3 months they don't allow parents because that is the time for the therapist to get to know the child!"

Another parent Preetha Anoop writes about her son who fractured his hand during occupational therapy: "I saw him lying unconscious and doctor explained about the pain killer that he had administered as he was crying out of pain. I have hardly seen him expressing pain as reduced pain sensitivity is a common feature of children with Autism. The pain should have been excruciating and above normal thresholds for him to actually feel it and express it.

"Shortly after, the doctor informed us that the X-ray results indicated that his hands were broken into two pieces. He asked us to probe into the situation and find out exactly how this has happened. He advised us immediate surgery. Autistic children cannot understand anything unless it's being communicated by someone who have won their trust. They have communication impairment and cannot comprehend easily. When we asked the therapist, he fumbled something about how he only applied little pressure..."

http://timesofindia.indiatimes.com/city/kochi/Parents-of-special-children-open-up-on-therapy-centres/articleshow/47369839.cms

Action against illegal therapy centres

20-May-2015

Sudha Nambudiri

KOCHI: District collector M G Rajamanickam on Tuesday has decided to take action against illegal therapy centres for special children suffering from autism and cerebral palsy under Section 133 of the CrPC.

Many such centres are being run in the city without necessary registration and documents from certified agencies for treating children with special needs.

The decision follows a complaint given by 'Together We Can' (TWC), a forum of parents of autistic children, pointing to the lack of a regulatory body to monitor the functioning of these centres. At a meeting of district officials of health, education and social justice departments, chaired by the collector on Tuesday, the officials said that these private institutions do not come under their purview.

"Since these 'special' children cannot express their problems, we would like to draft a list of common guidelines for such centres. We also want to ensure that these centres are properly registered with the authorized agency," the collector told TOI after the meeting.

He promised to conduct a survey of these centres in the city. "We will conduct a seminar in which all therapy centres, government officials, experts and parents will be invited. We will sort out the issues after listening to all parties and draft a common set of guidelines in the best interests of children," he said. The TWC along with the child welfare committee (CWC) chairperson, Padmaja Nair, had given a petition to the collector, complaining about negligence and apathy of private centres that provide speech and language therapy, occupational therapy, special education services, psychological counselling and other services, imperative for the progress of children with neurological disabilities.

As of now, there is no regulatory body that checks the functioning of such centres whose services are crucial for the development of children with disabilities. "However, we found during interactions with parents and visits to therapy centres that extreme cases of negligence were rampant, mainly because these centres were not accountable to anyone. Unfortunately, parents are taken into confidence by fake promises of cure," the petition said.

During therapy sessions, parents are not allowed inside and children, who cannot communicate, are under the mercy of therapists. There is no way to monitor if an abuse happens inside closed doors. Ignorance and lack of awareness of parents combined with the inability of children to communicate make the situation worse. Most of them are not registered with the Rehabilitation Council of India as required.

"In addition, a significant number of parents have not been given an IEP (Individualized education programme) and are not trained on 'how' to handle their child at home. Most parents said that they were not given a review of the progress made by heir wards. Children with disabilities are the most vulnerable group and easy prey for abuse of any kind," the petition said.

http://timesofindia.indiatimes.com/city/kochi/Action-against-illegal-therapy-centres/articleshow/47354738.cms

MEDIA RELEASE : Safety of children with developmental disabilities in private therapy centres

MEDIA RELEASE

SAFETYof children with autism
& other developmental disabilities
in private therapy centres.

Children with various developmental disabilities are unable to communicate and have various anxiety issues and sensory disorders. Recently, there have been a spate of issues at Private therapy centres where autistic children were restrained with binds to a chair or were beaten, pinched or otherwise terrorized. There was an incident where a child’s arm had a fracture during Occupational therapy by an unqualified therapist. 

In all one on one therapies involving a minor who has problems with communication, it is vital that the parent or primary caregiver accompanies the child at all times. The safety of the child is paramount and presence of a parent can prevent untoward incidences, abuse and psychological trauma. It can also facilitate a better learning environment for these children, who already struggle because of their disability. In Kochi, majority of the therapy centres do not allow parents to accompany the child inside the therapy room. 

Together We Can (TWC)  is an advocacy group started by parents in the wake of such incidents, with the active support of a few professionals who work in this area, journalists and child rights advocates. 

This group had submitted petitions to Child Welfare Commission, Kerala State Commission for Protection of Child Rights (KeSCPCR) and other such bodies, requesting for a directive which ensures the child’s safety within a therapy room. On 16th of May, a petition was submitted to the Honourable District Collector, MR. M G Rajamanickam IAS, with the help of the Chairman of the child welfare commission.

With remarkable level of understanding and empathy to the distress caused to the affected children and their families, the Collector called for a meeting of representatives of Together We Can and key representatives from the Social Justice department on the 19th. He carefully understood the issues and directed his office to issue a show cause notice to therapy centres, special schools and other such rehabilitation centres. He also directed the social justice department to conduct enquiries into these centres and to submit a report about how they can all be brought under a single regulatory umbrella.

Timely action by the Collector, who is the final authority for the welfare of the disabled under the National Trust Act, has given hope to the parents of children with neurological and developmental disabilities.

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.

What Parents Need To Know : Autism and other neurological disabilities #TogetherWeCan

Safety of children with autism and other disabilities

16-05-15 

Mr. M.G Rajamanickam, IAS 

District Collector 

Collectorate, Kakkanad

Ernakulam- 682030

Kerala.

Respected Sir, 

Subject : Safety of children with autism and other disabilities 

In the wake of several unhealthy practices reported by parents who seek therapeutic help through private therapy centres /hospitals in Ernakulam District, for their children diagnosed with neurological disabilities, the initiative Together We Can (TWC) began.

This is to bring to your notice the extent of the problem and the need for timely intervention. These parents are dependent on the private therapy centres for speech and language therapy, occupational therapy, special education services, psychological counselling and other services that are imperative to the progress of their children with neurological disabilities. 

As of now there is no regulatory body that looks into the functioning of such centres whose services are crucial to the development of children with disabilities so as to help them function inclusively in mainstream schools. 

However we have come to know through interactions with several parents and visits to therapy centres that extreme cases of negligence and apathy is rampant mainly because there is nobody these centres are answerable or accountable to other than parents. 

Unfortunately the parents who are still in the stage of shock and denial of accepting their child’s condition are taken into confidence by fake promises of “cure”.  In an extreme case a 5 year old child diagnosed with autism broke his arm during therapy and the centre has neither given a convincing reply nor are they willing to changes ways. 

It is of great concern that during the therapy session the parents are made to wait outside while the child who cannot communicate is under the mercy of a trained adult who is expected to teach.  There is nobody to monitor even if an abuse of any nature happens inside the closed door.  Ignorance and lack of awareness on part of the parent and inability of the child to communicate make them live at the mercy of anything and everything that is told to and done to them inside the closed rooms. 

In addition, a significant number of parents voiced that they are not being given an IEP (Individualised education program), they are not given a written home program and are not trained on ‘how’ to handle their child at home. Most parents voiced that they are not given a review of progress. Children with disabilities are the most vulnerable group and easy prey to abuse of any kind. Sir, we request your active support in creating an ethical, transparent, accountable, inclusive, safe and healthy therapy practices within the Ernakulam District. 

We are attaching herewith our petition sent to the SCPRC – State Commission for Protection of Child Rights and the District Child Welfare Committee. 

Thank you so much for your time and patience; look forward to your dynamic support and timely action to prevent any further unfortunate events from happening. 

Sincerely,

All @ Together We Can 

PETITION : District Child Welfare Committee, Ernakulam