The Institute of Mental Health and Neuro Sciences (IMHANS) in Kozhikode has started a project in Kozhikode and Malappuram districts to take medical care to the patients’ door steps to benefit children who are unable to travel.Shyam Prasad’s life and career is a study in motivation. He fought autism and cerebral palsy to pursue an academic career that eventually led him to the post of an assistant professor at the Central University of Kerala in Kasaragod. He was never let down by his parents, A P Prabhakaran and K Usha.
After post-graduation, Prasad pursued an M Phil course and doctorate at the Centre for Development Studies in Thiruvananthapuram. He worked as a research officer in the Institute of Rural Management Anand in Gujarat and as a post-doctoral fellow in the Indira Gandhi Institute of Development Research in Mumbai before joining the Central University of Kerala.
Differently able people are not looking for your sympathy. What they want is a community that understands them, Prasad says.
Part I: Young minds snuffed out by diseases and social apathy
Part II: Lack of care kills, so does ignorance
Part III: Support system gone, special children left to slug it out
Prasad’s achievement was not an exception. He represents scores of differently able achievers who have made it big thanks to the total commitment of their parents that ensured expert care for them.
Many endeavors in different parts of Kerala are aimed at helping out those who suffer from brain-related diseases and to lessen their sufferings. There are people who have sacrificed everything they could to work among the differently able people. There are special schools and care centers which are run with the money raised from local people. Still, as a society, we are not able to encourage such attempts or to expand them into a larger scale.
Kerala govt steps in
The Kerala government started a unique project in 2013 to prevent the occurrence of disability, diagnose diseases at an early stage, and to ensure education, unemployment and rehabilitation of the differently able people. The State Initiative on Disability was the first such project in India. The State Initiative on Disability functions under the Social Justice Department and is steered by an empowered committee headed by the Chief Secretary.
The SID has already spearheaded the hearing examination on newborn babies. It has also started a project to vaccinate small girl against mumps, measles and rubella to reduce the chances of disabilities.
The SID has also set in motion a process to start early intervention centres in all 14 districts to detect mental illnesses and other disorders such as autism and to provide expert care.
The Institute of Mental Health and Neuro Sciences (IMHANS) in Kozhikode has started a project in Kozhikode and Malappuram districts to take medical care to the patients’ door steps to benefit children who are unable to travel. Kozhikode district also boasts of a project that aims to identify disabled children at an early stage and ensure treatment to them.
Another SID project aims to take care of mentally challenged children left orphaned after the death of their parents.
Role models galore
The Child Development Centre in the Government Medical College Hospital in Thiruvananthapuram is a model worth emulating in this field.
From early-stage detection of disabilities in children to training parents to deal with the situations, the Child Development Centre has been leading many initiatives free of cost for the past three decades. The centre was developed into its current glory under the leadership of Dr M K C Nair, who leads the Kerala University of Health Sciences in Thrissur.
Malappuram gives us another model in the care of differently able children. The district panchayat has put in place a project, aptly titled ‘Pratheeksha’, in association with the local panchayats. This project is perhaps the first one in India to ensure long-term social participation for the chronically ill children. The project was mooted by Malayala Manorama in 2011 in a series of reports that argued for the collective effort of the state government departments, local self-government bodies and people’s representatives at the district level. Malappuram district panchayat and the district administration acted on the cue. The project was launched, aided by Rs 10 lakh raised by the paper.
Medical camps for differently able children were conducted after a survey found that about 8,000 children in Malappuram panchayat suffer from mental diseases. Advanced care centres were set up in Edappal, Kottakkal, Edavanna and Malappuram in association with the Institute of Mental Health and Neuro Sciences in Kozhikode.
Pratheeksha centres were set up by 24 panchayats in the district in vacant buildings in the government schools, ensuring expert care for more than 500 children. The centres even have facilities such as pedagogy parks.
Malappuram also presents another model from Valanchery, where the V K M Special School has been at the centre of a free surgery programme for 13 years. The project becomes unique with the participation of public and private sectors. The MES Medical College at Perinthalmanna offers the infrastructure support for the medical procedures.
The school, started by V K M Ashraf, offers free education to over 230 mentally challenged students.
As many as 219 children have learned to live with cerebral palsy and other disabilities thanks to the work of volunteers including Dr Gopakumar, a former orthopaedic professor in the government medical colleges in Thiruvananthapuram and Kozhikode.
A park that is truly special
The state government started its first autism park at Chengalur near Puthukkad two years ago. The current education minister, Prof. C Raveendranath, was instrumental in implementing this novel idea. The park offers physiotherapy, counselling and special education under the stewardship of two specially trained teachers. Kodakara BRC is in charge of teaching in the park.
The park is based on the idea that differently able children can be taken care of only when their families are secure. Even mothers of the students are offered training in different areas such as computer technology. Private companies too, contribute to the functioning of the park.
Even laymen can make a difference to the lives of the differently able children. A good case in point is the ‘Nest Caring for Children with Challenges’ run by the Koilandi Palliative Care Society. The project gets the support from many associations from several countries including the United States.
Each child and her parents are taken care of by a team including a neurologist, developmental paediatrician, psychologist, occupational therapist and a technician. The mothers are also given advanced training. The centre has all the facilities a physiotherapist requires, including a swimming pool.
Almost 90 percent of disabilities can be effectively managed, says Abdulla Karuvanchery and T K Yunus, who lead Nest.
In Nilambur, the Malappuram district Sarva Siksha Abhiyan has started a project that instils confidence in almost 1,320 differently able children in the schools in the educational sub-district with the help of teachers. The programme is coordinated by the Nilambur Block Resource Centre.
The centre’s functioning revolves around the distribution of teaching aids and workshop for parents to make such aids themselves. Classes are conducted on home-based education and activities to address problems and find solutions.
Kerala has no dearth of models that help out hundreds of children. What we need to do is to expand such activities to the entire state. Anganwadi teachers can be imparted with special training to enable them to detect disabilities in children in an early stage and intervene to make a difference. The project is already on in Thiruvananthapuram district under the aegis of the Social Justice Department and the Central Institute on Mental Retardation. Every Anganwadi teacher in the district is now specially trained to deal with mentally challenged children. The project has to be expanded to other districts as well.
