In Booming Bangalore, Children with Special Needs are Left Especially Vulnerable

In the progressive tech capital of India, jobs and work are plentiful — and while this is good news overall, some of the adverse side effects from rapid urbanization and an increasing migrant population make caring for orphaned and abandoned children with special needs particularly challenging. During a visit to partner program Swanthana in April, Holt Creative Lead Billie Loewen met the children and caregivers most affected by these challenges.

16-year-old Alyssa lives in a care center for children with special needs in Bangalore, India. Alyssa says she would like to be a teacher some day.
Sixteen-year-old Alyssa lives in a care center for children with special needs in Bangalore, India. Alyssa says she would like to be a teacher some day.

A pair of deep, brown eyes peer curiously around the corner of a dark hallway. Pushing herself through a doorway, a small girl with short hair and a long purple dress appears in an old, metal wheelchair. She keeps her head low, her eyes shielded behind a red headscarf. Her short hair is held back with a barrette and a bindi decorates her forehead.

Alyssa is 16 years old, and she is paralyzed from the waist down. Abandoned by her family years ago, likely due to her disability, Alyssa has lived in a home for children with profound special needs for three years. She is one of the few residents at her care center who is able to express her thoughts verbally. Her voice is quiet, but in English she will tell you about her dreams.

Alyssa wants to be a teacher, someday, and teach little children how to dream big. She wants to live independently.

Sadly, at the moment, Alyssa’s dream is just that — a dream. She doesn’t receive any life skills training because her caregivers are too busy for that kind of one-on-one attention. She never travels beyond the very limited borders of her care center. She is stuck in a world that has forgotten her, and it isn’t her fault.

A construction project in Bangalore, India. Because Bangalore is growing rapidly, work is plentiful, so many poor families living in rural areas migrate to the city for job opportunities. However, the rapid growth is also increasing inequality, which is felt most heavily by the poor.
A construction project in Bangalore, India. Because Bangalore is growing rapidly, work is plentiful, so many poor families living in rural areas migrate to the city for job opportunities. However, the rapid growth is also increasing inequality, which is felt most heavily by the poor.

Bangalore, India is a place of constant movement — a rapidly growing city of eight million marked by miles upon miles of towering buildings, new development and urbanization. The unofficial tech capital of India, Bangalore is a progressive city with much opportunity — and with that opportunity come massive swarms of people dreaming of a better life.

More than anywhere in India, Bangalore is a city of migrants who come in search of work on one of the city’s many construction projects. And, indeed, at the base of nearly every new skyscraper is a tent city — a neighborhood built from tarps and scrap materials, often without plumbing or electricity, where entire families of migrant workers often live for the 2-4 years they stay on a job site.

The eighteenth most populous city in the world, Bangalore actually has a relatively low population of people living in slums — just 10 percent compared to Mumbai’s 50 percent — but the rapid development has triggered massively escalating social inequality, displacement, public health crises, water shortages and proliferation of slum developments. Simply said, the people most hurt and disadvantaged through the increase of opportunity is the poorest class. Of the people living in slums, 42 percent migrated to Bangalore from another area.

On the outskirts of the sprawling development, the campus of Swanthana — a word that means “giving comfort” — is neatly maintained. Gardens surround two main buildings. It’s calm and quiet — almost tranquil — as we walk up concrete steps to a cool, marble building marked by wooden double doors. We knock and wait for several minutes until a woman in a traditional gray nurses’ uniform with a red cross on her chest steps outside and eyes us. Her hair is pulled back tight. Her face is clean and bare of makeup, her nails cut short and tidy.

She looks exhausted.

This is Sister Regina, and she is one of only four permanent caregivers left at Swanthana after more than seven others found new jobs and left unexpectedly.

With only four remaining caregivers, the work to feed, clothe, teach and provide medical care for more than 50 girls with special needs — most of them with needs more profound than Alyssa’s — has become unbearably heavy. Today, it shows in Sister Regina’s face.

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Sister Regina is one of four permanent caregivers at Swanthana, and she helps to feed, clothe, teach and provide medical care for more than 50 girls with special needs.

Without words or smiles, Sister Regina welcomes us into a large reception area and front desk, then down a long, wide hall lined with rooms — dark except for sunlight spilling through doors. She stops and ushers us forward, as if the hallway is free for us to explore. Sweet, shy Alyssa emerges from behind a doorway and begins to wheel herself toward us. We walk down the hallway and into the first door on the right.

Wooden cribs line all four walls, and inside each crib, a beautiful child. Nearly every child in this room — all girls — has profound developmental disabilities and are inaudible. They are unable to speak, but you can see their eyes respond when you bend down close and say hello. One little girl giggles as I trace my fingers over her hand. Another looks right into my eyes when I brush her hair from her forehead.

Mostly, these girls have been abandoned, and despite repeated attempts to reach their families through newspaper ads, they have never come forward. It’s likely that many of the girls come from migrant families who are no longer in the region, having relocated after their job completed. Some of the girls have families who occasionally visit — though most do not. Some of the girls, now teenagers, have been in care here for most of their lives.

In total, Swanthana provides refuge and care to 50 girls from age 2-16 years old. Almost all of the children will likely need caregivers for their entire lives. Most of the girls have developmental delays or disabilities, though there are several children with physical special needs, like cerebral palsy or quadriplegia.

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David Lim, Holt’s vice president of Asia programs, visited Swanthana in early 2015. Here, he is seen interacting with two of the children in care.

Our legacy partner in Bangalore is Vathsalya Charitable Trust, an organization that we’ve been partnering with to provide care to vulnerable children and families in the region for more than 25 years. In 2007, VCT began partnering with Swanthana, and over the past several years, transferred eight children receiving special needs care from VCT to Swanthana to receive quality, long-term care. Holt and VCT donors also helped to fund a new physical therapy and rehabilitation center at Swanthana, building up an already strong care center.

Today at Swanthana, the nuns work around the clock. Always, someone must be on shift. Sometimes, late at night, they may have to rush a child to the hospital. Almost constantly, children need to be fed or changed. Just keeping up with the minimal amount of care is both physically and emotionally exhausting work. Since many of the girls are now older, the nuns and caregivers struggle to move them alone. While they know the girls should be sitting up to eat, it can be too hard to carry them to a chair alone, and they end up feeding them while they are laying down.

_DSC1768It can be especially hard for children like Alyssa, who is considerably self-sufficient. She can prepare meals or snacks, get herself ready to go for the day without much assistance, and even help with other children. However, this means that she has even less interaction with loving, caring adults. With more one-on-one attention, Alyssa could become even less reliant on the help of caregivers. She could learn life and job skills, and maybe grow independent enough to live alone.

However, with such massive staff shortages, those types of activities are impossible.

In Bangalore, jobs are so plentiful that it can be difficult to find child care workers, since work caring for children is generally not easy — especially for children with profound special needs. That, mixed with funding issues and the fact that Swanthana is fairly remote and disconnected from bus lines, have made it difficult to replenish the loss of staff here.

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David Lim, Holt’s vice president of Asia programs, visited Swanthana in early 2015. Here, he is seen playing with one of the little girls in care.

In 2006, when Swanthana opened its doors, the nuns hoped that this care facility could provide something that the Indian social welfare system does not — a robust, modern method of care with a low ratio of caregivers to children, not unlike Holt’s cornerstone program in Korea, Ilsan.

Ilsan is a very special home in Korea — a home where so much of Holt’s history is based — that provides temporary and long-term care to children and adults with special needs. The campus bustles like a self-contained town, offering daily activities, crafts, classes, vocational training, specialized therapies, support groups and more. World renowned and internationally celebrated, Ilsan is an amazing blueprint for how to run a care center for children with special needs, since both the long-term residents and children placed with adoptive families are thriving. Over the years, dedicated donors have ensured that the needs of the residents are met — and not met at a minimum level, but at the highest possible level of care. The center is led by Molly Holt, daughter of Holt’s founders, Harry and Bertha Holt, and she has dedicated most of her life to caring and advocating for children with special needs.

Three years ago, Holt created a fund in her honor, and the proceeds aim to serve children with special needs all over the world. Children like those at Swanthana.

Of the children at Swanthana, eight receive support from Holt sponsors who help ensure that their daily needs are met.

Swanthana also receives assistance to provide food to all the children, so the children are well fed and receive excellent nutrition. The facility itself is also beautiful. There is plenty of space, indoors and out, for the girls to play and learn, to attend vocational training courses and to receive therapy. There are art rooms and classrooms already, but the art projects on the wall are aging. Mostly, children are confined to their cribs or spaces they can move to without help.

Looking at Swanthana’s beautiful grounds — all those peaceful gardens — and the modern, clean, spacious building, it is easy to see why Swanthana could be a future Ilsan. However, without more staff, the children will never receive the care they deserve.

The needs at Swanthana are urgent. Without proper care, children are confined to limited space and receive minimal attention. However, without Swanthana, they would be in a much worse place — either a larger orphanage with less resources, or alone on the streets.

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5-year-old Dina practices putting on and removing her shoes.

Dina is 5 years old, and she bobbles around the room in little foamy sandals. She looks much younger — maybe 3 — partially because of how wobbly she is on her feet, and partially because she’s undersized for her age. She’s wearing blue paisley leggings and a maroon button down, with her dark curly hair in a ponytail on top of her head. A big lump sticks out from the back of her neck — a large tumor that throws her balance and equilibrium off when she walks, making her fall. She travels from visitor to visitor to give hugs and grab our hands. She points at her shoes and falls to her bottom, indicating she wants help to take off her Velcro sandals.

While it is hard to see what Swanthana has become with such meager staff, it’s also clear that children like Dina would never survive if it weren’t for the care she receives here. If she were on the streets, she would be vulnerable to abuse and neglect. Without constant watchful eyes, one crash to her head could kill Dina. Here, she receives the medical attention she needs, even though her tumors aren’t treatable.

The loss of staff in the last few months has taken what was once a beautiful, world-class facility and rendered it difficult to function.

However, staff needs are just temporary. Already, Holt and VCT have rushed emergency funding to help Swanthana hire an additional special education teacher and a part-time social worker. But still, more must be done.

That’s why we are writing to you today. Without your help, the care here cannot  return to it’s former level, much less be improved further. With your help, we can continue to develop Swanthana — as well as programs that care for children with special needs around the world — to the quality of programs like Ilsan.

When you give a gift to the Molly Holt Fund for Children with Special Needs today, you tell a child with special needs, like Alyssa, that their dreams are not just a distant hope. You actively provide the resources she needs to live a full, happy life. Donations to the Molly Holt Fund help support and grow programs like Swanthana by providing staff support, medical resources, educational resources and more to programs for children with special needs.

 Billie Loewen | Holt’s Creative Lead

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