The project, called COMPASS (Communication centered Parent mediated intervention for Autism Spectrum Disorders in South Asia), is a collaboration between an impressive list of institutions including University of Manchester, Havard Medical School, Sangath, Maulana Azad Medical College and associated Lok Nayak Hospital, AIIMS, National Health Systems Resource Centre and Kings College London. COMPASS will train ASHA workers (government community health workers) to visit families in their own homes, to deliver the program under the supervision of the NGO’s health staff.
Autism is a developmental disorder, which causes social communication difficulties and impacts one in a 100 children. India will have more than 2 million children with autism under the age of 10 years. Most services in India are currently based in urban centers and delivered by specialists, which means that most families have no access to help for their children.
Dr. Gauri Divan, who leads the project in India said, “This is such an opportunity for us to work towards filling the gap of autism care in India. We are excited to be working with the ASHA workers in Delhi. We have seen that they have sensitive counseling skills which will help us to train them to be effective delivery agents for our autism intervention.”
Prof. Jonathan Green, the Chief Investigator from the University of Manchester who is visiting Delhi said, “We hope that this work will pave the way for the establishment of relatively low cost evidenced and effective interventions to improve the lives of the many autistic children in India." One of the panelists, a parent advocate of a child with autism, Shamika Ravi, emphasized, “Knowledge of autism is limited everywhere in India, and the gap is particularly severe in underserved communities. We endorse this effort and eagerly await empirical evidence which can be scaled up across the country.”
Pallavi Shankar a parent of a child with autism, was clear that only, “When changes start happening at the policy level and not just in photo-ops events for autistic children, then change will truly happen and legitimize the childhood of those on the spectrum.”As the lead of the AIIMS child neurology service, Dr. Sheffali Gulati felt that, “The main stay of management for disabilities is a home based approach, parents play a central and pivotal role. Having trained ASHA workers in the loop will be of great additional value if this is found to work.”
Dr. Monica Juneja, who oversees the child development clinic in Maulana Azad Medical College assoc Lok Nayak Hospital, “Significant results of this landmark study might open up the avenue for a play based intervention that can be delivered in homes.”
In COMPASS the team will train ASHA workers in community settings such as the homes of families. This effort is aimed at addressing the challenges of families who currently visit MAMC and AIIMS for services but find it difficult to manage the frequent travel to avail of centre based services. The Parent mediated intervention for Autism Spectrum Disorders for South Asia Plus (PASS Plus), which will be evaluated has already been field tested in Goa and Kolhapur in Maharashtra. This work will provide the first trial evidence to inform the ambitious plans of the Government of India to scale up community based interventions for ASD through programs such as the Rashtriya Bal Swasthya Karykram.
Sangath, established in 1997 (www.sangath.in); is now one of India’s leading community based health research NGOs whose work has been cited as having led to "innovative research of relevance to public health in developing countries” and as one of the leading examples of academic psychiatry in the global context. Sangath was awarded the prestigious MacArthur Foundation International Prize for Creative & Effective Institutions in 2008. Starting out 20 years ago as Goa’s first multi-disciplinary child development clinic, Sangath has now conducting work across India with a view to developing packages of care for community delivery for a range of mental health conditions. It has been the state nodal agency for the Government of India’s national health program, the National Trust for the Welfare of Persons with Autism, Mental Retardation, Cerebral Palsy and Multiple Disabilities.
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