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.

Source: http://www.indianexpress.com/news/boy-with-epilepsy-shuttled-between-two-welfare-homes-in-four-months/943272/0

Asha Kiran- a state run hope for disabled reports 12 deaths in December alone!

Dear Friends,

Nothing is well at Asha Kiran. With the capacity of 350, you stuff 730 inmates, isn't this a violation of basic human rights of those who can't take care of themselves due to their disabling conditions that they live with?

Also are we providing sufficient support to the numbers housed there with one carer looking after 40 persons? Is it humanely possible for one person to care 40 inmates with varying degree of disability and associated medical condition like epilepsy, tuberculosis- forget about fever, cold, smaller injuries! This is gross violation and you can't expect the carers to work at Rs 3934/- per month and look after 40 people every day.

Perhaps it is the fear of catching infections that even the doctors do not examine them closely and properly! This is just not acceptable. The facilities need to be created /provided strictly as per norms as it is the responsibility of the Govt. Each life is precious !

Hope each one you are perturbed at the conditions that prevail at Asha Kiran in Delhi and several other institutions across length and breadth of India in similar state which never make headlines! If we tolerate it as an accepted norm, perhaps we don't deserve to be called a socialist democratic republic!

Source: For inmates, few rays of hope at Asha Kiran; Express Newsline 11 January 2010

In December, 12 people died at this home for mentally retarded; few caregivers, little care, reveals report by Social Welfare Department

As the green ambulance rolls through the 7-ft gates of Asha Kiran complex, in Awantika, near Rohini, a middle-aged man looks out of the window, trying to capture one last glimpse of the outside world. Within seconds, the gates shut.

In December, 12 deaths were reported here — three of them within 24 hours.

The inquiry report by the Social Welfare Department (a copy of which is with Newsline) under which the centre works, concludes that death is not new for Asha Kiran.  Over the last four years, 128 inmates have died in the home. The complex, built for 350 people, now houses 730.

“The mentally retarded inmates suffer from multiple deficiencies as far as physical health is concerned. Because of this, particularly in respect of severely retarded inmates, life expectancy is relatively low,” reads the report filed by Director, Social Welfare, S A Awardi. According to the report, 60 per cent of inmates are in the “category of severely or profoundly mentally retarded persons.” Many inmates do not even survive a year. There is no segregation of people who have infectious diseases like tuberculosis.

The inmates are taken care of by ‘house aunties’. The staff reveals that each of them sometimes take care of over 40 people. They are paid Rs 3,934 per month for 8-hour daily job — which probably explains why a majority of the caregivers quit within days of joining.

“The inmates feed each other and give each other a bath,” said a sweeper working in the male ward. “There’s too much noise and it is not easy to work.”

The report states: “Many gave up their jobs after serving for a very short period. It is mentioned that providing every care like a mother to mentally retarded persons is really difficult.”

Constant medical care is available. But the staff say the doctors merely prescribe medicines without even closely examining the inmates.

Despite the fact that the walls of the complex are nearly 10-feet tall and the high gates are guarded 24-hours, the officials have even reported cases of children going missing. On December 24, the Social Welfare Department advertised in newspapers about two inmates. One of them, Raju, was 16 years old and 4.8 ft tall. He was admitted on 21 May and has been missing since 16 September. More bizarre was the case of the 7-year-old boy admitted in December 2006. The child was merely 3.6 ft tall.

December deaths

Dec 2: Krishna (16), living here since 2007. Post mortem report awaited

Dec 9: Anu (20), had been staying since 2006. Cause of death tuberculosis and epileptic fit

Dec 12: Ranveer Kumar (48), was admitted at Sanjay Gandhi Memorial Hospital, Mangolpuri, since 16 November following dehydration and swelling in legs

Dec 14: Manjeet (55) was admitted at the Sanjay Gandhi Hospital, suffered from swelling of body

Dec 15: Raj Kumar (42) admitted in Sanjay Gandhi Hospital since 12 December. Had swelling of body, difficulty in breathing

Dec 18: Seeta Gauri (19), living here since 1989. Cause of death cardio-pulmonary arrest

Dec 19: Sandeep, was under treatment since Nov 29 at Sanjay Gandhi Hospital, was referred to LNJP. Cause of death Meningoencephalitis with refractory shock

Dec 25: Soni, living here since in 2007, died due to seizure disorder

Dec 27: Meena Payal (38), living here since 1999, postmortem report awaited

Dec 29: Angoori (19), living here since August 200, was suffering from asthma and TB

Dec 29: Sangeeta (21), had been living here since 1996. Body discovered several hours after death, was a victim of bone tuberculosis

Dec 30: Deepti (12) had been here since March 2009, cause of death epilepsy