A novel model of care—integrating education, treatment and social and emotional development—that addresses the issues of people with disability
This research examines a new holistic approach of care for persons with cerebral palsy and their families, developed by The Spastics Society of India (now ADAPT). The focus is on a new psycho-social model that combines education, treatment and socio-emotional development in social rather than in hospital settings, making inclusive education in regular schools possible. The author also narrates her experience as a mother, care-giver and professional, and the role of family support.
Based on 40 years’ work, the book provides an example of compassionate and effective care as well as its scalability. Using narratives of children, parents, doctors and other professionals, it shares the journey of pioneers who helped and trained others who eventually went on to create similar institutions all over India, empowering both parents and disabled but self-confident professionals.
Mithu Alur has been closely involved with education, healthcare and employment, for women and children, leading to social change, legislation and social policy for more than 50 years. Her doctoral research dissertation from the University of London was entitled ‘Invisible Children―A Study of Policy Exclusion’ which analyzed the Indian government’s educational policy for children with disability.
Her daughter Malini Chib, who is disabled, has been the reason for her involvement with disabled children. Malini too has two Masters―in gender studies and in information technology―from the University of London.
Dr Alur set up the first model of The Spastics Society of India (SSI) in Mumbai in 1972. This was the first special school in India for children with multiple disabilities, providing them education, treatment, and looking after their socio-emotional development under one roof. Her approach emphasized professionalism combined with care and compassion. Children were to be treated as children first and not as handicapped children. This was a new concept in India at the time.
This path-breaking work led to the development of a very successful model of education for children with disability which spread out all over the country. This model has been replicated in 16 of the 31 states of the country. Children from the organization have moved out and become accountants, lawyers, businessmen, librarians, or have completed their PhDs. The government too has now made cerebral palsy (CP) one of the official classifications amongst the 11 categories that already exist.
Dr Alur has also served on several government committees. She is a member, Central Advisory Board for Education (CABE), New Delhi; Round Table on School Education, Ministry of Human Resources Development (MHRD), New Delhi; Round Table of Elementary Education of Disadvantaged Groups, New Delhi; Working Committee for Implementation of Right to Education (RTE), New Delhi; National Advisory Council working group on child protection, New Delhi; National Monitoring Committee for Education of Scheduled Castes, Scheduled Tribes and Persons with Disabilities. At the state level, Dr Alur has been involved in community-based projects which deal with state and municipal authorities and non-governmental agencies. She is particularly known for her work at the ground level, empowering parents, families and disabled adults.
On the international front, Dr Alur put forward the concept of a dialogue between North and South countries and organized four conferences called the North-South Dialogues (NSD) with representation from South Africa, Brazil, Bangladesh, Hong Kong (China), Canada, Norway, UK, Chile, Pakistan and Russia. The proceedings of these conferences have also been published.
In the area of pedagogy, Dr Alur has initiated several courses for teachers, therapists, administrators and parents. Presently, she is involved in a course in collaboration with the Women’s Council, UK, which reaches out to master trainers in the Asia-Pacific Region. Known as Community Initiatives in Inclusion (CII) course, it has been taught for over 15 years and has trained over 230 students from as diverse countries as Mongolia, Bangladesh, Nepal, Tonga, Malaysia, Pakistan, Indonesia, Tajikistan, Tonga, Sri Lanka, China, Cambodia, Vietnam as well as India.
Researcher, author, lecturer, a national and international contributor, she has ranged over the dimension of social policy, producing cost-effective methodologies to address educational needs of children and has published extensively on issues of disability rights and the ‘hows’ of educating disabled and disadvantaged children within a challenging framework of exclusion.
