Child Rights
If they are not adopted, children with special needs miss out on medical care and nurturing from parents.
Children at Swanthana, a home for girls with disabilities.

Eight-year-old Abhi climbs on to his mother’s lap, rests his head on her shoulders and wraps her up in hugs. “He’s making up for all that he’s missed in his first two years,” says Abhi’s father Venkatesh Gopalakrishnan, smiling. It’s been only four months since Gopalakrishnan and Sarmishta Venkatesh adopted Abhi and brought him to their home in Bangalore.

Abhi’s is a rare case in India, of the adoption of a ‘special needs’ child. Born with spina bifida, a condition in which the spinal cord is malformed, Abhi is paralysed from the waist down. He also suffers from hydrocephalus, a condition in which fluid builds up in brain cavities, and from neurogenic bladder that causes urinary incontinence. He had been abandoned as an infant by his birth mother in a hospital.

During his first eight years in a children’s home in Andhra, Abhi had gone through 11 hospitalisations and eight surgeries. This includes a minor plastic surgery that became necessary after someone accidentally placed a hot plate on Abhi’s lap, causing burns. Lacking sensation in his legs, Abhi hadn’t realised his leg was burning. “He’s had a traumatic past,” says Gopalakrishnan.

Gopalakrishnan, a pastor and software engineer, and Sarmishta, a graphic designer and counsellor, had not intended to adopt a special needs child. After Sarmishta suffered two miscarriages, the couple had got registered as Prospective Adoptive Parents (PAPs) at the Central Adoption Resource Authority (CARA). CARA, under central government’s Ministry of Women and Child Development, is the nodal body for adoption of children. During registration, the couple had submitted preference for a ‘normal’ child below two years of age, like most other PAPs do. “We went for the safe bet, the low-risk category. We were open to adopting a special needs child, but weren’t sure if we were ready for it,” says Sarmishta.

But registering to adopt a child between 0-2 years old meant that the wait period would be 1.5 to 2.5 years. As their wait time got longer, Sarmishta and Gopalakrishnan looked through the ‘special needs’ children’s list.

No takers for children with special needs

As per CARA regulations, ‘special needs’ comprises a broad range. It includes 59 physical conditions - ranging from missing fingers and severe stammering to cancer and HIV - along with mental and neurological conditions. It goes beyond the 21 conditions legally defined as disabilities as per the Rights of Persons with Disabilities (RPD) Act, 2016.

As per CARA data, very few Indians adopt from this category, even though about half the children in the adoption system have special needs. There are about 2080 children up for adoption now, of whom around 1010 children are in the special needs category. The number of registered parents is about 20,000 - 10 times the number of available children.

As per a recent report in The Hindu, only 49 special needs children were adopted within India in 2016-17, out of the total 3210 adoptions. That is, only 1.5% of the in-country adoptions that year were of special needs children. The pattern is similar every year. Comparatively, more special needs children are adopted by foreigners. In 2016-17, 41% of the children (237 out of 578) adopted by foreigners had special needs.

Also neglected is the list of ‘immediate placement’ children - mostly those who are older or were repeatedly rejected by PAPs. To promote adoption from special needs and immediate placement categories, CARA allows PAPs to look through these lists even if they had registered for a ‘normal’/younger child. The lists are compiled from registered Specialised Adoption Agencies (SAAs) across the country.

Raising the child

Being a special needs child who was older, Abhi’s chances of being adopted were extremely slim. But Sarmishta and Gopalakrishnan says that, from the list, he seemed to be one of the few children who were well-cared for. “In the website, most children were described only by their disabilities. Also, their medical records had discrepancies. But Abhi’s records were clear, he looked happy in the photos, and his agency had a blog where they described him as a person - what he’s like and his interests,” Sarmishta says. The couple got further details from Abhi’s agency, and met him, before finalising the adoption.

They then sought two months’ time from CARA - they had to prepare a budget and make their house accessible to him, such as getting a floor-scooter from the US. Then there was disapproval from those close to them. Even the first doctor they met - a prominent neurosurgeon in Bangalore - advised them to not adopt Abhi. But the couple stood their ground, and gradually people came around. “Now they pamper Abhi. He also has friends in the apartment. And we found good doctors later,” says Gopalakrishnan.

While Abhi’s condition is not curable, his life has turned around. He has travelled across Karnataka with his parents and is now being home-schooled. But the biggest change is perhaps in how he has bonded with his parents.

Abhi with his parents Sarmishta Venkatesh and Venkatesh Gopalakrishnan

Gopalakrishnan says that Abhi has subliminal anxiety, the fear that he may be rejected. “He has seen caregivers coming and going his entire life, and other children getting adopted. Even when I leave him in another room for two minutes, he thinks we are going to leave him,” he says. While the parents are still learning how to care for him, Abhi is changing too. He now sleeps in a separate room and can be separated from his parents for hours at a time. The parents say they may send Abhi to a regular school once he becomes older and more independent.

Sometimes they get overwhelmed by strangers staring at Abhi, or the lack of disabled-friendly access to public places. Gopalakrishnan says that better accessibility is needed, like in US where a wheelchair-bound person can be fully independent. The couple says that more people should adopt special needs children. “After all, everyone has some issue or the other,” says Sarmishta.

Many special needs easily treatable 

While children like Abhi need longer term care, some special needs children’s conditions are more easily treatable. Jenna, 3, adopted from a Chennai shelter by Canada-based Kristi Santosham last year, had cleft palate. Kristi, a physician herself, says the cleft palate was not a challenge at all. “I was more concerned about her lag in emotional development, she probably had never been cuddled before,” says Kristi. Jenna has now undergone two surgeries and will need one more surgery when she’s older. She is currently seeing a speech therapist, but faces no other issues, says Kristi.

Sara (name changed), an NRI based in Singapore, had adopted her 18-month-old daughter a year back. The child was in special needs category due to blocked tear ducts in her eyes. The condition can lead to blindness if not treated. But for now, only regular monitoring is needed. “She hasn’t had any issues yet. If there is a problem, it can be corrected with a laser surgery when she turns six,” says Sara.

Art work by children at Swanthana home for girls with special needs, in Bengaluru.

It is such medical care and nurturing from parents that special needs children miss out on if they are not adopted. Even in the case of children without special needs, there’s usually some developmental delay that parents have to help bridge. But in the case of special needs children, without early intervention, disabilities get compounded, which further limits the child and also severely reduces her chances of getting adopted.

Smriti Gupta, an adoptive parent and now an adoption counsellor, says, “If an infant has hearing impairment and she doesn’t get a hearing aid or treatment, she wouldn’t be able to learn anything too. By the time she is four, she may be categorised as having both a hearing impairment and a learning/developmental disability.”

The problematic idea of a ‘perfect child’

Adoption counsellors say that special needs children’s adoption isn’t common because of parents’ idea of a ‘perfect child’ - often of a specific gender, skin colour, community and even hair type. Social stigma and fewer facilities for the disabled also dissuade many. Gayatri Abraham, Founder of Padme, a resource centre for adoptive parents, says that rapid changes can’t be expected. “In the last few decades there’s been more openness to adoption, but there’s still a long way to go. At this stage, adoption of special needs children doesn’t even get talked about. The key is to give more information.”

But the current adoption system only serves to hide rather than promote special needs children, says Smriti.

“While registering in CARA, PAPs have to opt for either a ‘normal’ or a special needs child. They can’t opt for both categories. Also, they can select children from one age group only - 0-2 years, 2-4 years and so on. In this scenario, most PAPs would take the easiest option - a ‘normal’, 0-2-year-old child. Also, the special needs and immediate placement lists are not highlighted enough in the site, and many PAPs don’t even know about these options,” she says. Smriti is currently preparing a proposal for CARA. It includes suggestions like informing PAPs about wait period for different categories of children, sending PAPs emails about special needs children’s availability, giving better details about child’s special needs while also describing the child as a person in the website etc.

Swanthana home in Bengaluru

In some cases, children with severe disabilities are completely kept out of the adoption system itself. Swanthana, a home for physically and mentally challenged girls in Bangalore, has 48 children. Sixteen girls here get special education, of whom four attend a regular school as well. One of them is eight-year-old Shreya (name changed), who her teachers say is highly intelligent. Shreya has a deformed chin and ankle, because of which she didn’t get adopted. She was sent to Swanthana after an SAA was unable to place her with a family within 2-3 years.

Children in Swanthana are currently not in the adoption system, though all of them can be made legally free for adoption. Most of them were rescued after their families had abandoned them at places like railway stations, in dustbins or at hotels. A senior officer at Karnataka Women and Child Development department says, on condition of anonymity, that these children are not in the adoption system probably because of officials’ assumption that severely disabled children won’t get adopted. She assures that the children would soon be included in the adoption system.

Most PAPs don’t get any counselling in the current system either - they register in the site, and collect the child when their turn comes. On paper, there are many options for counselling, but most adoptive parents The News Minute spoke to didn’t know about these. Lack of counselling means PAPs are unaware of the possibilities of adopting a special needs child, and also the requirements for this. “Most people think if they adopt a special needs child, they’d be spending all their time in hospitals, which isn’t true. But there should also be an understanding that both treatment and management may be needed later,” says Smriti. Even parents who do adopt a special needs child are often not counselled on how to care for that particular child.

With some change in attitude in PAPs and wider society, and some improvements in the adoption system, more special needs children may be able to find a home and turn their life around.

In Part 2 of the series, we look at the kind of care that special needs children get in children’s homes, when they are not adopted by a family.