Monday, April 30, 2012

Boy with epilepsy shuttled between two welfare homes in four months

Dear Colleagues,

All of 12 years, and found abandoned at New Delhi railway station, his medical report shows he was diagnosed with epilepsy. In four months, he has been made to scuttle between two childrens’ homes, spanning the jurisdiction areas of three Child Welfare Committees (CWC), only to be returned to the first — as authorities at the two other institutions called him a “disturbance” to other inmates.

The CWC (Mayur Vihar), on December 29, 2012, had sent him to Don Bosco home in Okhla as authorities found the children’s home in their area “not equipped to handle his medical needs”.

In March, authorities at Don Bosco home, under CWC (Lajpat Nagar), said that “being a short-stay institution housing 20 children, we are not able to adequately manage the child and it becomes a disturbance for the other children.”

The boy also sustained a head injury after he accidentally fell down during an episode of fits while he was there. The authorities of the home suggested that the child be sent to another one — Antodaya Niketan in Kashmere Gate, “for its proximity to St Stephen’s Hospital and their better resources, which will help them manage the child properly.”

So, on March 25, CWC (Lajpat Nagar), ordered he be moved to Antodaya Niketan.

But within three days of being transferred here, in an official letter dated March 28, Antodaya Niketan authorities said, “The child is continuously afflicted with epilepsy and needs special attention. Moreover, it is a disturbance to other children at our home.”

They requested CWC to “transfer the child to other homes specialised in handling such cases.”

CWC (Kingsway Camp) directed the child be transferred back to Don Bosco last week.

According to Father George Nadackal, director of the Don Bosco Home, “This child needs a lot of special attention. We have to devote an attendant permanently for him. Also, his medical expenses amount to a lot — MRIs, CT scans, etc. We do not have the resources to take care of his needs. Now that he is back with us, we will try to find a solution.”

Tej Wilson, social worker at Antodaya Niketan, said, “We could only keep this child for a few days, because he had a lot of special needs and other children were getting disturbed. Since he was being well taken care of in Don Bosco, we requested our CWC to transfer him.”

With no designated home for long-term care of children diagnosed with neurological disorders, CWCs say they are in a constant dilemma over finding a place of care for such children. “Authorities at most homes say they do not have the facilities to take care of these children,” Raaj Mangal Prasad, chairperson, CWC (Lajpat Nagar) told Newsline.

However, department of Women and Child Development (WCD) officials dismissed these arguments as “excuses to turn away children”. “All normal homes are supposed to take care of the special needs of children. Isolating those with neurological disorders is not correct,” WCD Director, Rajiv Kale said.

The unwritten rule in Delhi institutions, is to direct children to Nirmal Chhaya home where an NGO, Manas Foundation, provides mental health counselling service. “We have over 120 psychiatry patients — 10 of them diagnosed with epilepsy. Since we provide a facility, all CWCs have started referring such children to us,” said Monika Kumar, Managing Trustee of Manas Foundation.

Nirmal Chaya chairperson Neera Mullick said, “We take care of all children diagnosed with epilepsy. It may be traumatic for other children to see them in a state of fits, but isolation is not the solution.”

The boy will be produced before the CWC ( Lajpat Nagar) on Monday where a final decision on his stay will be taken.


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