Nine panchayats in Chikkaballapura has at least 50 children with cerebral palsy. Mostly from poor families, the parents of these children are finding the going tough with little government support.
Published Aug 22, 2024 | 3:00 PM ⚊ Updated Aug 22, 2024 | 6:53 PM
Remya is waging a lone battle, which she cannot afford to lose.
This is the second part of a series on children with cerebral palsy in Karnataka’s Chikkaballapura. Though cerebral palsy has received much media space, parents — specifically — mothers from poor families seldom get the attention they deserve. They need immediate support for taking care of the children and for a dignified life. Read part one here.
The steely gaze cannot be missed. Even as four-year-old Vishwak rested on his mother’s shoulder like a bunch of drooping amaranthus, Remya looked determined to fight “fate” — an oft-mentioned excuse made in adverse, helpless conditions.
“Fate” has become a recurring metaphor in the lives of mothers like Remya, who nurse their children with cerebral palsy, braving the odd but often contemptuous look of society.
They soldier on, hoping for the best, fighting adversity with whatever they could lay their hands on. After all, mothers are the fiercest warriors.
Still, they hope for a helping hand that could put them in an advantageous position in their struggle to provide their unwell children with a decent future. Remya, too, was hopeful.
“Will the government listen to our woes if you write about my son and other children like him in our district,” the mother wondered when South First met her at Halehalli in Karnataka’s Chikkaballapura.
Families like that of Remya, despite being eligible for government aid, find themselves battling a system that seems more inclined to exclude them. Rejected Aadhaar card applications, denied benefits, and the absence of accessible healthcare have left them in a state of hopelessness.
Ramya’s story is one of the many in Chikkaballapura, where parents of cerebral palsy-affected children flay neck-deep in debt incurred on medical expenses.
Cerebral palsy cannot be cured. However, doctors said that it is equally important to recognise that the condition does not define a person’s entire future.
Dr Sudhir Kumar, Consultant neurologist from Apollo Hospitals in Hyderabad explained cerebral palsy as a neurological disorder caused by a non-progressive brain injury.
“Cerebral palsy is an unfortunate condition and is not so common. The basic reasons are the problems during the delivery, known as the perinatal complications. It can be a few hours to days before the delivery, during the delivery, or after delivery,” he said.
There are various kinds of cerebral palsy and children with the condition face many problems. It is life-long or may last many years.
“This condition puts a lot of burden on the parents and one of the parents has to be with the child 24/7. It’s usually the mothers who quit their jobs and careers and take care of their children. They need physiotherapy and speech therapy. If the child has convulsions then the cost of medication for anti-seizure medicines, frequent hospital visits, doctor consultations all these drain financial resources,” Dr Sudhir explained.
Meanwhile, parents of children with cerebral palsy said they are tired of hearing doctors saying, “It is all your fate and you now have no option but leave it to destiny,” Ramya said.
She explained that every day begins with cursing god for giving a child with this condition and hearing her neighbours, and relatives calling it a ‘fate’ or ‘karma’ from the previous ‘janma’. Adding to it, “doctors tell us that it is all destiny and there is nothing we can do. It is all fate. Don’t leave us to fate. Support us at least with money and treatment facilities that my child genuinely deserves,” Ramya requested.
Regular medical camps, streamlined processes for obtaining necessary documents, and proactive outreach by local government workers could make a significant difference. Moreover, financial aid should be made more accessible, and the existing schemes should be expanded to cover all essential needs of these families.
Jayamma, a physiotherapist with the Karnataka Vikavalachetanara Sangatne (KVS), a local NGO, spoke about the situation: “There are 50 children with cerebral palsy in just nine panchayats of three taluks (in Chikkaballapura). The burden on their families is unimaginable. Without proper government intervention, they are left to fend for themselves.”
Ramya, along with many other mothers in Chikkaballapura, continues to fight a losing battle against a system that has largely turned a blind eye to their plight. The Chikkaballapura district’s struggle with cerebral palsy is a stark reminder of the need for a compassionate and proactive government intervention.
While preventing cerebral palsy is important — which could to a great extent done by ensuring child delivery in clean and healthy environments. “Stress should be on institutional delivery,” Kiran S Nayak, Founder and President of VKS said.
Nayak said regular multi-specialty health camps in collaboration with local hospitals could significantly benefit children with cerebral palsy.
“Such medical camps must be held at least twice a month in our neighbourhood. Here, the children must be able to access free medical check-ups, physiotherapy, and consultation. It should ensure that children receive timely medical intervention. Now, we have to take the child to Chikkaballapura, 23 km from the village,” he said.
Meanwhile, medicines for convulsions put a huge financial burden on parents. While several cannot afford to travel to Chikkaballapura, many do not trust the doctors in the locality. They go to private hospitals in Bengaluru, and end up paying large sums — mostly raised through loans with high interest rates attached — on consultations and medications.
“Our doctor at a private hospital in Shivajinagar (in Bengaluru) treats him well. But the charges are high. Other than the consultation fee, medicines cost at least ₹15,000 for Vishwak,” Ramya said.
Free medical camps would not only reduce the financial burden on families but also improve access to necessary healthcare, making a crucial difference in the lives of these children.
Jayamma opined that physiotherapists at the medical camps could help children with cerebral palsy. “They need physiotherapy regularly. It alone can help several children with cerebral palsy gain a lot of strength. However, due to the distance they now need to travel and the money involved, most children don’t get the services of a physiotherapist.”
Nayak also called for the provision of wheelchairs through Public public-private partnerships. “This could ease the burden on parents,” he said.
He said many centres specialising in orthotics and prosthetics in Bengaluru have been offering customised seating solutions for children with cerebral palsy. Some stores specialise in mobility aids and adaptive equipment, he added.
Parents and KVS volunteers requested the government to simplify and expedite the process for obtaining Unique Disability Identity (UDID) cards by setting up mobile camps in villages and providing on-site assistance for families.
“When the parents take children to ‘cyber centre’ for Aadhaar card, biometric systems do not work,” Nayak said.
If a proper mechanism is rolled out, children will receive the necessary documents to access government benefits without unnecessary delays. Meanwhile, the volunteers requested the government to ensure that the middlemen are not involved and ensure full funds reach the caretakers.
Nayak said the government could train caregivers to manage cerebral palsy-affected children at home and create support groups where they could share experiences and receive emotional support. “This improves the quality of care and provides emotional relief for caregivers, reducing feelings of isolation,” he opined.
Awareness campaigns must be held to educate families about government schemes, the importance of early intervention and how it could be done free of cost at government hospitals, and how to access services.
Nayak also called for a system for the regular monitoring of the implementation of the interventions, with feedback loops involving families and local communities.
He also suggested setting up daycare centres with one or two trained hands for children with cerebral palsy. “It will help hundreds of women and men who step out to work. They can leave their child at the daycare centres, at least for a few hours and the mother can step out to work,” he said.
If the government could ensure these interventions then it could provide a holistic support system that not only addresses the immediate medical needs of children with cerebral palsy but also ensures long-term sustainability and well-being for their families, Nayak added.
Meanwhile, Dr Venkatarmana NK Chairman and Founder of the Brains Hospital in Bengaluru told South First that it is important to audit cerebral palsy cases because it would help in curbing the condition. “The audit details can help in improving antenatal care and perinatal care where in majority of brain insults happen,” he said.
He also explained that children need treatment and support from an early stage. “Based on data analysis, preventive programmes could be implemented in high-density areas,” he opined.
The majority of cerebral palsy cases result from preventable factors and constitute a significant portion of overall cases, according to Dr Swathi S Sanjee, DM Neurology, and Consultant Neurologist at St. John’s Hospital, Bengaluru.
She emphasised that conducting thorough audits to identify the underlying causes of cerebral palsy in children could play a crucial role in preventing future occurrences.
(Edited by Majnu Babu)
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