The Uttar Pradesh government is awaiting clearance from the Centre for an ambitious project to rehabilitate children disabled by Japanese encephalitis (JE) and acute encephalitis syndrome (AES) that kill hundreds and handicap an equal number every monsoon season in eastern U.P. and the adjoining region.
Brain fever affects the nervous system, resulting in mental retardation and hearing impairment.
The proposal for educational rehabilitation of the mentally retarded and physically disabled children is stuck following objections raised by the Union Ministry of Human Resource Development, which said the project could not be included under the Right of Children to Free and Compulsory Education Act, 2009. For, the U.P. proposal is for exclusive institutional education, while the law provides for inclusive or home-based education for such disabled children.
The U.P project comes under the National Programme for Prevention and Control of JE and AES, which was based on the recommendations of the Group of Ministers late last year. Under the Rs. 3,350-crore programme, being implemented in 60 districts in the country in the first phase, the States were asked to conduct a survey of children disabled by the disease and recommend rehabilitation measures for them.
According to a preliminary survey conducted in the Gorakhpur Division, close to 6,500 children have been disabled. The U.P. proposal envisages the setting up of 65 centres — 20 of them in Gorakhpur district — where the children could be imparted special education and skill development, besides providing boarding facilities under the provisions of the RTE so that they do not become a financial burden to their families. The capital investment in these 65 rehabilitation centres is estimated to be Rs. 4,371 lakh and the annual expenditure at Rs. 2,117 lakh.
“We are hopeful that the project would be cleared soon,” Gorakhpur Division Commissioner K. Ravindra Naik told The Hindu. These centres would require special educators and equipment also.
As of now, there is only one Manovikas Kendra being run at the BRD Medical College Hospital, where affected children are being attended to during day. “However, the number of children is less because there is no transport facility to bring them on a daily basis,” says Anita Tripathi, in charge of the centre, which has facilities for IQ testing, physiotherapy, vocational training and speech therapy. “But most children quit after a few days because bringing them here is difficult for their parents, besides being a financial burden,” she says.
That’s why the U.P. government proposed boarding centres for such children.
Take the case of Munna Shah. He was 7 years old when he contracted JE in 1998 following floods in the city. A Class V student, he was admitted to hospital for 10-12 days but by the time fever subsided it had impacted his brain, leaving him retarded for life. His father Madan Shah, a street vendor, pulled all his children out of school to pay for Munna’s medical expenses, in addition to repaying a huge loan he took. Even now the family spends Rs. 3,000 a month on Munna’s medicine.
Initially, the child was sent for physiotherapy but it was discontinued because it was expensive. “The doctors now tell us a brain surgery can cure Munna of regular seizures and bouts of violence but his physical disability will remain,” says Madan Shah.