While there are a few special homes that cater to children with specific severe disabilities, many disabled children are sent to regular CCIs that may not be able to give them the right medical care.

Adopting a child with special needs How the child protection system fails themChildren at Vishranthi trust at Bengaluru.
Delve Child Rights Monday, May 21, 2018 - 12:56

Read Part 1 of the series here

Veda was 15 months old when Kavita Baluni adopted her from a children’s home in Bhopal. She weighed just 6 kilograms and had not attained any learning milestones of a child her age. She could not crawl or sit, and just lay down most of the time. Kavita says she was weak, anaemic and malnourished.

The home had got Veda diagnosed with Down Syndrome but hadn’t done anything more. “They kept telling us that she would be fine with our care. But Down Syndrome is not curable, and they didn’t seem to know this,” says Kavita. The management also didn’t know that Veda was suffering from associated conditions like vision problems. “In case of Down Syndrome, vision and hearing tests, ECG etc are usually done. But the children’s home didn’t seem to have done these,” says Kavita.

Veda now wears glasses and goes for occupational therapy and physiotherapy every alternate day. Within a year of adoption, she has transformed - she now sits, walks with the help of a walker, and is well-nourished and active. Kavita routinely updates Veda’s story on Facebook. She says that, if it was not for the adoption, Veda is unlikely to have got the right care. “For Down Syndrome, early intervention should happen within the age of 0-3 years. Even regarding her vision, the ophthalmologist said she was already late in getting care,” she says.

Smriti Gupta had faced a similar situation. Smriti’s now five-year-old daughter has a mild level of cerebral palsy, which mostly affects her legs. But in the Central Adoption Resource Authority (CARA) website, she had been listed under the ‘normal’ category, and her condition wasn’t mentioned. When Smriti went to her daughter’s shelter home, the medical reports there only said that she couldn’t walk, she says, “There was no diagnosis of her condition. At the age of three-and-half years then, she walked with difficulty - she frequently fell and needed support.”

Now, with the right treatment, Smriti’s daughter goes to school and does all activities. “She runs, jumps, does yoga and swimming. She also climbs stairs with a little support. She only has to wear corrective boots and go for regular physiotherapy sessions, which is no different from taking my other daughter to swimming classes,” says Smriti.

Importance of early intervention

Early intervention is crucial for children with special needs - it can exponentially improve their condition, while the lack of it can cause the child to deteriorate and also develop secondary disabilities. But care for special needs children varies across children’s homes, also called as Child Care Institutions (CCIs). While Kavita’s and Smriti’s daughters had not got the right intervention at their shelters, some others like eight-year-old Abhi, suffering from spina bifida had got the necessary treatments at his Andhra orphanage.

Former CARA Chairperson Dr Aloma Lobo says that CCIs are not specifically equipped for special needs children. “They will give basic care, but very few can give advanced care, especially for children with severe conditions. Adoption makes all the difference in such cases. Most agencies lack the funding and facilities to care for these children.” She says that there are no specific protocols regarding which CCI should take in children with a particular special need.

Dr. Aloma Lobo

While there are a few special homes that cater to children with specific severe disabilities, many disabled children are sent to regular CCIs that may not be able to give them the right medical care, disabled-friendly infrastructure or educational facilities. Also, they may not be able to link the children with professionals who can give specialised care like occupational therapy, for specific conditions.

In Mumbai, children with special needs are sent to nearly all CCIs, as special homes are filled to capacity, says Lucy Mathew of the NGO Catalysts for Social Action (CSA) that promotes adoption. While mainstreaming of special needs children is welcome, the question is whether CCIs are equipped to support them

CCIs not equipped

Most CCIs are run by NGOs who have to raise their own funds to run the institutions. Very few get government grants. For instance, in all of Karnataka, only eight CCIs get grants from the Women and Child Development (WCD) Department. Whereas, in Bangalore alone, there are about 100 registered CCIs.

Even the homes that do get funds, may not get as much as is required. One of the eight homes eligible for funds in Karnataka is Swanthana, a special home in Bangalore for physically and mentally challenged girls. Sr Cicily, in charge of Swanthana, says the home gets government grant of Rs 20-21 lakh annually. But their monthly expense is Rs 3-4 lakh. The gap in funding is met by donations. Also, the home has not been getting any government grants in the last two years. A district level officer of the state’s WCD department says the amount would soon be released.

There are no protocols on the kind of care that CCIs are supposed to give to special needs children either. A senior officer at Women and Child Development department says, on condition of anonymity, that CCIs have to give care as per available facilities. “They should have a visiting paediatrician who can refer the children for therapy/treatment in empanelled hospitals. If the child needs a surgery, CCI should take initiative to approach the Health Department and avail the surgery under government’s RBSK (Rashtriya Bal Swasthya Karyakram) scheme,” she says. In any case, initiative depends on the individual CCI.

Dr Lobo mentions the case of a girl who was at Ashraya, a Specialised Adoption Agency (SAA) in Bangalore that is now shut down. “The child had a genetic condition, and Ashraya was the only agency willing to take her. They got two surgeries done but could not afford the third.” Dr Lobo’s own adopted daughter with special needs then raised the funds for the third surgery from her school. With these funds, Ashraya was able to get the third surgery done; and as the child’s condition improved, she was adopted by a family abroad.

Another issue is that a large number of CCIs holding children are not registered under the Juvenile Justice (JJ) Act, 2015, and hence are out of the purview of authorities. As per a Supreme Court order in May 2017, all CCIs have to register under JJ Act compulsorily. But in Bangalore Urban district alone, the district WCD officer estimates there are 400-500 CCIs overall, many of which are yet to be identified. Only 250 of these are listed, among which around 100 were found fit and are currently registered under the Act.

When a special needs child is neglected

Not just in CCIs, special needs children may not get the right care even from their own parents. Divya’s mother had surrendered her to authorities last year, when she was just 1.5 years old. Divya was then suffering from pneumonia, malnourishment and a heart condition. Her mother was destitute, and her father had abandoned them.

The Kolar district Child Welfare Committee (CWC) sent her to the SAA Vishranthi Trust. The district CWC, a quasi-judicial body, is responsible for making decisions on abandoned or surrendered children. Sarasa Vasudevan, Founder of Vishranthi trust, says they got Divya treatment for the next seven months, spending Rs 5.5 lakh, after which Divya improved rapidly. But doctors said she would need a heart surgery when she turned seven.

Sarasa Vasudevan, Founder of Vishranthi trust

However, Kolar CWC transferred Divya back to her mother soon after, saying that her best interests was in living with her mother. The decision was based on JJ Act, which says that adoption should be the last option, only if the child’s biological parents are unavailable. Sarasa points out that Divya’s mother lives in a cattle-shed, and that Divya may not survive in such conditions.

Kolar CWC member D K Saraswathamma says, “At times the mother said she wanted Divya, and at other times she said she didn’t want her. We can’t put up the child for adoption without the mother’s consent. She has committed to get the child’s surgery done.”

Chaithanya R, Protection Officer at Kolar District Child Protection Unit (DCPU), says one follow-up was done on Divya six months later, and follow-up would be continued for another 1.5 years; after this CWC will decide if further follow-up is needed, she says. But the senior WCD officer says that the mother herself would have to take initiative for getting Divya’s surgery done, and the DCPU can only support her if she approaches them. “Once we transfer the child to parents, she’s their responsibility,” she says.

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