An autistic five-year-old child stacks blocks while sitting at a table with a therapist as an intervention for developing communication skills. In the adjacent room, a child with cerebral palsy is called upon to do precisely the same thing. Just along the corridor, a child with ADHD does another identical worksheet. Different diagnoses. Different developmental needs. But the intervention is quite similar.
This example is not representative of the reality at every rehabilitation centre—as any parent or professional will tell you—but a concern often heard: Is therapy becoming too much of a cookie-cutter service?
Now the question has gone before the Supreme Court.
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While registration, qualified professionals, infrastructure and monitoring are all legally mandated requirements to run a centre for persons with disabilities, the petition alleged that most centres operate without these formalities.
For parents, the question is not simply one of infrastructure, but of whether kids are being given treatments appropriate to their own specific developmental profiles.
As Dr Meera Krishnan, a Bengaluru based developmental paediatrician, explained: “You might have two children who both fall on the autism spectrum but their strengths and sensory needs, communication styles and learning goals can be vastly different.”
“Let’s assume you have an actual therapy plan — your plan should begin with assessment. Meaningful outcomes do not occur with copy-paste interventions,” she adds.
Depending on how the goal is defined, there are rehabilitation possibilities. One child will require support and guidance through occupational therapy for regulation, while another may need more help with augmentative communication strategies or social communication. Intractable motor rehabilitation in a child with cerebral palsy has little similarity to programs aimed at neurodevelopmental conditions, such as ADHD.
Therapy should not be provided as it would in a classroom, says Jaipur-based Arvind Rao, a rehabilitation specialist: “Every diagnosis has evidence-based approaches, and every child within that diagnosis has individualised needs. The art of therapy is not in repeating it — but in changing it.”
Parents devote heavy emotional and financial resources to rehabilitation. Many make long journeys, wait months for appointments and pay a high proportion of household income on therapy sessions. When interventions are not based on sound evidence or implemented by poorly trained personnel, it’s not just the waste of funding but also restricting a child from reaching his or her developmental capacity during critical early years.
Shortage of trained rehabilitation professionals, no mandatory registration and prescribed standards for infrastructure and inadequate monitoring mechanism are amongst the issues flagged in a petition pending before the Supreme Court.
It calls for stricter enforcement of existing laws, annual auditing, standards for professional qualifications and a national database of rehabilitation centres treating children with disabilities.
It is not about bureaucracy, disability rights advocates argue but safeguarding disadvantaged children and providing decent care. Implementing standard procedures, clear grievance mechanisms and regularly inspecting centres could easily help differentiate those based on evidence from centres run poorly.
Neurodevelopmental specialist Dr Nisha Menon says “The larger issue is not the lack of therapy but that there isn’t enough individualisation. So many centres have fixed therapy modules, where all children are expected to complete identical activities regardless of their type of diagnosis/developmental stage/individual goals.
“Therapy should not be based on a checklist, but instead, therapy should be underpinned by thorough assessment and regular reassessment. When interventions become routinized rather than tailored to children, we miss the important opportunities for children to learn how to care for themselves in ways that matter most in their day-to-day lives.”
The service can only be considered genuine rehabilitation with lasting benefit if the sessions are meaningful, ethical and personalised for the child.
With the oral arguments before the Supreme Court, families nationwide are praying that the conversation changes from obtaining therapy to getting the right therapy by having it delivered by appropriately licensed professionals and for the right child.
