Tiny tots' trauma in therapy

CHENNAI: Being a caregiver for a child with a disability is a full-time responsibility. Whether it’s intellectual disability and/or learning disability, caregivers, who are often parents of the child, battle challenges every day such as prevalent stigma, lack of access to adequate resources for their training, and affordable treatment.

What’s worse is the lack of awareness about the right kind of therapy that’s required for their ward. Occupational therapy, behavioural therapy, and psychotherapy are some of the words thrown at parents, who are clueless about their child’s disability, and hence misled into believing there’s a ‘cure’, or that their child would become ‘normal’.

Mental health consultants explain that disability cannot be treated like a disease that can be treated with a set of protocols and procedures. Therefore, every child should be treated like an individual case.

Traumatised kids

There are many media reports of children with learning disabilities traumatised by the so-called mental health professionals who pose as qualified doctors but do not possess the skills or qualifications for it.

One such incident that shocked the city recently was that of a three-year-old, who was found with his hands and legs tied in a private therapy centre. A shocked family member had gone to pick him up when he found the child in that condition, crying and screaming for help.

It was supposed to be a speech therapy session, which seems to have done more damage to the child. However, the therapist claimed that it was a commonly-practiced therapy method in about 23 centres that he owned across the city.

Dissatisfied with his response, the child’s father filed a police complaint against the centre. But the cops were flummoxed, as they too were unsure about the therapy process. So they requested an opinion from a speech therapist and audiologist of the Differently Abled Welfare Department to assess the practices and staff qualifications at the centre.

“The report to the directorate highlighted serious concerns about the centre’s efficacy and reasoning of its therapy methods and staff qualifications — both of which did not receive approval from the Rehabilitation Council of India (RCI). Furthermore, there are 23 branches of the centre in Chennai, all of which may share similar issues,” explained an official from the department, which has also written to the district Collector and to the Chairperson of RCI urging the body to take appropriate action as per the provisions of Section 25 of the RCI Act against the therapy centres for ensuring the safety of disabled children.

This is not an isolated case. In Salem, two occupational therapists and a woman assistant assaulted a seven-year-old child with special needs using a plastic bat and a stump at a private hearing aid and speech therapy clinic at Azhagapuram.

Parents filed a complaint with the clinic’s owner after they realised that their child was assaulted. Though they had CCTV footage to confirm it, the incident was not reported to the police.

“In most cases, there are no police complaints on such incidents because parents are scared that their child would be denied care in other centres if they do,” opined Vaishnavi Jayakumar, member of Disability Rights Alliance, and co-founder of The Banyan.

Also, many children are non-verbal, or fear makes it difficult for them to communicate the issue to parents properly. When parents figure it out, they move to another centre and the issue continues.

This is, in large part, due to parent’s lack of awareness and understanding on the role of therapy. There is hardly any information about it within the Indian context. So, issues of assault and trauma add to their dilemma, leaving them suspicious about the benefits of therapy and a professional.

Lack of awareness

These are no the only few times where a wrong therapy approach was chosen. The lapse is common among parents, who do not understand the nature of their child’s disability. Most therapy methods are not affordable.

Those that are, run the risk of not being effective enough, and hence making it worse for the child. Lack of awareness about the disability and the right therapy method compounds the problem.

A mother of a seven-year-old with locomotor disability tells DT Next that initially, she did not know how his disability could be treated. “He’s also a slow learner. My relatives had told me about a private clinic near our home in Perambur. Therapists there said that they had treated a lot of children like my son but they did not tell us how it works. We just wanted a good future for him and wanted him to do well in his studies,” she recalled.

After over a year in therapy later, the child grew more silent, withdrew into himself, and became scared of everything. “He told me the staff was rude and that he didn’t like the centre. I don’t know what happened but I knew there was no improvement with him. So, I took him to the Institute of Mental Health (IMH). I still don’t know if my son will ever get better,” rued the mother.

Sudha Ramamoorthy, special educator and member of the Disability Rights Alliance, opined that it was important that the child’s disability is demystified to the parent. “They need to know the type of disability their ward has, its limitations and challenges, and the measures to manage them. They should also know the kind of therapeutic measures available in the city — psychotherapy, occupational therapy, behavioural therapy, speech therapy — what each entails, and the right combination that would benefit the child,” she pointed out.

They have to understand their child’s nature of disability and the severity of it, which is the only way they can choose the right kind of therapy, how long it would take, and how it works.

“When approaching a therapist, parents need to know what they should expect from therapy. It’s not a quick fix,” added Sudha. “Parents and the therapist, together, should agree on the therapy plan and re-assess the progress in 3-6 months, whichever works better. If the goals are not achieved, then the therapist has to record the reasons why.”

Expensive sessions

Therapy sessions for children with special needs are not cheap. In fact, the proverbial hole in the pocket is likely to get bigger with time. More often than not, parents are asked to pay for each session without being informed about the process. And, some of these therapy centres don’t offer one-on-one sessions with the child.

Premalatha, mother of a child with a learning disability, stated that a 45-minute group session cost her Rs 750. “The centre took one month for assessment, which included Rs 3,000 as charges for filing a report which had a session of occupational therapy, speech therapy and special education each. But despite paying so much, my son was traumatised,” lamented Premalatha.

Her son struggled with anxiety but he is verbal. So he was able to communicate about being beaten by a few therapists at the centre. “I wanted to discuss the complaints with the therapist after dropping my son for a session. But at the time, he was not available. So I told the caretaker who was handling the class to take care of my son. When the therapist came to know about this, he screamed at me for speaking to the juniors. That’s when I decided to stop sending my son there. They had a policy that I should not discuss about the class or money with other parents too,” she recalled.

Therapists at IMH cite incidences when children have been taken to religious centres and traumatised with physical and sexual abuse.

“The family of one of my patients took her to a priest to treat her mental health issue that came from her inability to manage her learning disability. He molested her. Families take their ward to a priest or spiritual guide and hope their child becomes ‘normal’. They bring the child to us years later but by then it’s too late,” said a psychotherapist at IMH.

Lack of awareness about the disability, diagnosis and treatment, and the prevalent superstition and societal taboos on them embolden therapy centres to flourish even with their faulty practices.

One of them was a therapist who made tall claims and false promises on curing and healing autism through online classes.

“She was charging Rs 1,500 per session that promised to cure autism and ADHD in 30 days. She was even selling a book worth Rs 9,000 that promised a cure. Since the case is being adjudicated, I cannot name this person but we had to take action against her,” said an official from the Directorate for the Welfare of the Differently-abled.

Such claims, and a book that seemingly authenticated everything she said misled parents and guardians.

“We didn’t arbitrarily take disciplinary action. We brought in experts to cross-check her methods to prove that it was not practically possible to cure autism and ADHD,” added the official.

Therapists have to apply to the Central Drugs Standards Control Organisation for approval of any new therapy methods, mainly the ones involving energy assessments. Only after the approval can these novel treatments be implemented on patients.

“Parents too, should keep track of the recognition of the therapy centre, if the professional was certified and has a licence from the Rehabilitation Council of India and has the right educational qualification to be a therapist,” said a senior official from IMH.

Unlike physical illnesses...

A mental disability of any kind should not be treated in the same manner as a physical illness. There is a list of protocols and procedures to diagnose and treat a physical illnesses. But for learning disabilities, the process is individualistic.

Ernakulam-based Seema Girija Lal, mental health consultant and founder of Together We Can, an advocacy forum for child and disability rights, emphasises the need for changes at a policy level when dealing with disabilities and rehabilitation.

“Mental disability in India is still treated at a ‘medicinal’ level and not with a behavioural understanding of it. Meaning that it’s more about treating the symptoms and putting a band-aid on them hoping that it would get better,” added Seema, who could not stress enough about educating parents about the safety and risks involved in getting their ward treated with such extreme measures.

“Many parents believe that hitting children, screaming at them, or even tying them up is normal treatment but it may end up doing more harm to the child psychologically. They need to understand that improving their child’s quality of life is a long-term process, which is why there needs to be a constant effort to educate them about it,” she explained.

Policy in Tamil Nadu

After a public interest litigation by Seema, a policy for regulating the therapy centres in Kerala was implemented, which mandated the involvement of parents in such centres in Kerala. Tamil Nadu continues to lag behind in this area.

“The policy implementation is important. We’re recommending district-level committees to monitor the functioning of these therapy centres,” she added.

It’s not always quacks but even approved therapists sometimes tie-up a child, hurt them or beat them using a cane. But this happens when parents are told they cannot be involved but it’s not a school.

“Parents are very much an essential part of therapy, as the child goes back with those therapeutic effects. So unless parents understand what the therapy is about and how it’s done, they will be unable to cope with the child at home,” she pointed out.

The Department for the Differently Abled has expressed interest in developing a similar model in Tamil Nadu and has sought support from the Indian Institute of Public Health (PHFI).

“A systematic empirical research tasked with the objective of ensuring an evidence-based framework of minimum standards for the registration of therapy and rehabilitation service provision centres was completed in 2022. But this has not been enacted yet,” said Prof Sureshkumar Kamalakannan, co-director, Cochrane Affiliate for Disability and Public Health.

Until a policy is implemented, it’s the responsibility of the Differently-abled Welfare Department and State Health Department to come up with administrative action against therapy centres. But activists in the disability sector opine that a policy would be inadequate if it’s not followed by penal action.

Prof Sureshkumar avers that rehab centres and the professionals involved in them must be regulated pragmatically. “Law and Order can start penalising unqualified service providers and imprison them but this is not going to prevent quacks. The regulation must expel them from practicing if malpractice is proven,” he states.

There is also a need to improve access to these rehab centres, which have to be governed by principles of availability, affordability, appropriateness and approachability. Health and social welfare ministries must work together to ensure services and treatment are based on quality and safety, and provide multi-disciplinary, need-based, context-specific and function-oriented services.

“Currently, disability or rehab service provision is not the responsibility of these departments. National programmes run by the health ministry do not have a multi-disciplinary therapy team in any of their operational plans. The current National Council Framework for Allied Health Professionals focuses only on education, not service provision and professional practice or research,” adds Sureshkumar.

Currently, the Department for the Welfare of the Differently-abled is working towards drafting a policy for regulating therapy centres in TN. A senior official, “We’ve shared a proposal with the government on the implementation of a policy. It’s under the consideration of the government.”

A rigorous registration process for rehab centres in Kerala

According to a policy by Kerala’s Social Justice Department, there are guidelines prescribing minimum standards for the registration of therapy centres in the State.

The notification states that all cases need to go through a registration process. Each patient will be allotted a unique registration number, and all their socio-economic and demographic details, and also contact information, will be updated.

Registers are maintained for daily cases and follow-ups, and the assessment report including the case history are filed. An Individualised Therapy Plan (ITP) is planned after a discussion with parents, who are also given at-home training.

Parents, guardians or caretakers, or the client sign a consent form for the services provided. Separate consent is sought from the parent or guardian or client in the case of a photograph or video of the person with disability is required.

The policy also states that the physical presence of parents or guardians or bystanders shall be allowed inside the therapy room. If that’s not clinically possible, sessions would be visible to parents through an observation window or CCTV or any other electronic or non-electronic mode.

In the case of a person with mental illness, sections 22, 23, 24, and 25 of the Mental Healthcare Act 2017, shall be followed for the right to information, confidentiality and access to medical records. The policy also mandates periodic evaluation reports to be generated once every 3 months, or on demand and should be issued and signed jointly by the parent or guardian or client and therapist.

Therapy summary of every person should be prepared at the time of completion of therapy and also on demand of the client with a copy maintained in the centre.

All therapy-related documents should be signed by a certified therapist who has a registration number. Maintain daily data regarding the number of sessions taken by each therapist. All documents should be kept for a minimum of 5 years from the date of registration at centre, in electronic mode.

The names of professionals and their designations, qualifications, working hours of the centre, and fee structure should be displayed at prominent places in the centre. Name and qualification of visiting professionals, if any, should be displayed at the centre and minimum standard in the qualification of the professional should be met.

A direct therapy session should have direct-client contact of minimum 30 minutes. Centres must ensure accessibility as per the Rights of Persons with Disabilities Act 2016.