# 6 Spastic Society of Karnataka – Helping kids with Cerebral Palsy

· In the last 37 years Spastics Society of Karnataka has served more than 50,000 children and their families · In the last 5 years SSK has served around 4000 children with Cerebral Palsy  · Parent Staff – Around 55 of our staff members are parents of persons with special needs · Number of special educators trained by Department of Human Resource Development & Training in Diploma in Education – CP at Spastics Society of Karnataka- 157 · Teachers trained in Inclusive Education at SSK: 280

Modern medicine has seen many advancements aimed at curing ailments, improving quality of life, pushing barriers in developing access to medical care. For reasons unknown, science is yet to find a solution for preventing cerebral palsy one of the most common neurological problems afflicting motor co-ordination in children. Muscular dystrophy is progressive and painful to watch. There are few things more distressing than to have to care for a child knowing that their condition will worsen every progressive year, at a pace more rapid than slow.

However, counsellors, therapists, neurologists and social workers at the Spastic Society of Karnataka have worked tirelessly, so that children and their parents can live more lightly.

Dr Mahadeviah, Paediatric Neurologist

For over four decades now, the Spastic Society of Karnataka, has been lending support to children and parents with special needs. This week, the organisation was declared a Merit Award Winner (Medical and Therapeutic) at the World Palsy Day awards 2019, Australia. The institution, headed by Rukmini Krishnaswamy, 86 years, has been selected for delivering comprehensive medical and therapeutic services which have impacted the quality of children with cerebral palsy.

The Spastics Society of Karnataka is a Non-Government Organization (NGO) dedicated to the welfare of persons with Neuro-Muscular and Developmental Disabilities. The Society provides a comprehensive package of diagnostic and intervention services to persons with Cerebral Palsy, Autism, Mental Retardation, Multiple Disabilities and Learning Disabilities.

Mrs Krishnaswamy, an alumni of Harvard University, has helped scores of children and parents at both the SSK campus in Indiranagar as well as at the outreach programmes in rural Karnataka. Even today, she makes it a point not to miss the assessment camps at different locations in Karnataka. She says the Centre is always focussed on “action that either achieves the goal or is a significant step towards the goal of the comprehensive rehabilitation of children with Developmental disabilities.”

“The service provided to the children and families is of the highest quality comparable to many centres even in the United States and other western countries.  We need a couple of thousand centres to serve the children with disabilities in this country, at the most fifty centres or even fewer exist. “

Dr Mahadeviah

The Diagnostic and Research Centre was set up in the year 1997 with an essential need to provide all medical and therapeutic services under one roof. With 80% of children coming from low economic strata of society, services under one roof was a crying need for parents who were going from one hospital to another; one doctor to another with their child with cerebral palsy. The Centre was the first of its kind in India and still remains as a model of comprehensive intervention.

Medical Diagnostic services are rendered by a team of specialists- Pediatric Neurologist, Pediatrician, Orthopedic Surgeon, Ophthalmologist, ENT specialist, Psychiatrist and Dentists.  Therapy services include physiotherapy, occupational therapy, speech therapy and sensory integration therapy.

Medical Director Spastic Society of Karnataka and Paediatric Developmental Neurologist Dr. Mahadeviah, who has worked extensively in the US says: “The service provided to the children and families is of the highest quality comparable to many centres even in the United States and other western countries.  We need a couple of thousand centres to serve the children with disabilities in this country, at the most fifty centres or even fewer exist.  Better than Before.  Let us hope many more will come up.”  Dr Mahadeviah is often consulted by Indians abroad for a second opinion on several neurological issues. His approach is practical and he has the benefit of having treated thousands of children with manifestation of a symptom. “We have millions of case studies because of our population. There are few things we do not come across in the span of our careers,” he says. This is something that India should capitalize on in terms of publishing evidence based research.

A team of physiotherapists and occupational therapists provide developmental therapeutic services to children, adolescents and young adults with cerebral palsy and other developmental conditions.       

The range of services in physiotherapy/occupational therapy/ speech; language; alternate augmentative therapy for children with cerebral palsy include – assessments and early intervention with home-based programmes for children below seven years of age; assessments and intervention for children between 8 years and 16 years for mobility and hand function; emotional or academic concerns/learning difficulties.

Mrs Krishnaswamy says “The aim is to enable children with cerebral palsy to become as independent as possible. To empower parents, family, and community to incorporate therapy in the child’s natural environment.”

The comprehensive medical therapeutic model of the Diagnostic and Research Centre was extended to other locations and state districts as a Cluster Model in partnership with District Government Hospitals and Public Health Centres, District Disability Rehabilitation Centres, where the team interacts with the medical panel onsite for early diagnosis and interventions. This model has been extended to different locations with the SSK team of therapists, special educators and medico social workers providing the comprehensive services. Since the children seen in these state districts come from economically and socially disadvantaged backgrounds, majority of the services are provided free of cost.

The Cluster Model

Priya Rao, Associate Director says the cluster model, which works in partnership with other organizations, especially government hospitals in the rural areas allow SSK to serve children with special needs, mostly from economically-disadvantaged background by providing quality intervention services closer to their home.

SSK’s special educators / therapists visit these hospitals and render services on a regular basis. The hospital staff are sensitised in the area of special needs. Parents of children with special needs at the respective centres are trained to support the existing staff at the respective centres.

“As an NGO we have financial constraints to start our own centres in rural areas. This model helps us use the infrastructure of existing hospitals to provide quality services for the poor and needy with less financial investment,” says Rao.

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