Out of sight, out of support: Disability care lags in Delhi's slums in most trying of times

Time of India

6 hours ago

New Delhi: In the congested pockets of Delhi's working-class neighbourhoods — from Old Seemapuri to Okhla's Batla House — conversations about disability rarely come up. When they do, they are soon drowned by disbelief, confusion and stigma.
This disconnect was clear when NGO Astha, which works with children with disabilities, presented its findings, 'Covid-19 and Children and Persons with Disabilities in Urban Slums of Delhi' on Tuesday.
The findings of Astha's outreach, which spanned over 40 underserved settlements, more than 2,000 helpline calls and intensive work with over 250 children, are clear: nine of every 10 children with disabilities lost access to therapy and learning during the pandemic and only 3.6% of children under eight years received disability pension.
Raising a child with a disability in a low-income household often means doing it alone without information or assistance. For instance, Rubina didn't even know what autism was. When undergoing an ultrasound test at a local clinic, she was told something might be wrong with the baby's brain. Later, at the govt hospital, the advice was blunt: "There's a chance he might not survive or consult regularly." The boy, the second of her three children, is now five.
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Rubina, who lives in Old Seemapuri with her husband, an electronics shop salesman, and has a household income rarely crossing Rs 15,000, didn't know what to do. When the pandemic hit, even the hospital visits stopped. With some help through phone consultations, she carried the pregnancy to term. Her son was born looking healthy, but within months, she saw "he wouldn't make eye contact, wouldn't hold our hands, didn't try to stand".
The hardest part for Rubina was not hearing her son call her mamma. "It still hurts," she murmured.
While the doctors declared it autism, the family though he was just slow, sometimes feared it was nazar (evil eye). But it was there to stay. "It is a bitter truth," said Rubina. They didn't know what to do about his schooling until they got in touch with Astha when the boy was three. The NGO helped them push for official paperwork and it took two years of follow-ups before she finally got his disability certificate this year.
Today, her son goes to a private school under the EWS quota. "We tried govt schools, but we didn't feel confident. Who would sit with him? Who would help him eat or open his tiffin?" she said. "When he started school, it was a new journey for all of us."
In Batla House's Hazi Colony, Nazreen had a similar experience. Her seven-year-old son didn't respond to his name as a baby. "At first, we thought maybe he was just the quiet type or maybe he couldn't hear," she revealed.
But as time passed, the signs of autism became clearer. "If people like us don't even know what autism is, how can we help our children? There should be awareness campaigns, like for polio, simple, clear, everywhere," she said.
For Pooja Singh, who lives in a slum cluster in Okhla, the struggles began even earlier. Her first child had a seizure just 15 days after birth. The hospital cost came to more than Rs 60,000. "We have no idea how we managed it," she said.
"But was there another option?" That hospital visit was just the first of many. A health crisis in the family arose every year or two until even the second child was diagnosed with Duchenne Muscular Dystrophy, a rare degenerative muscle condition.
"The doctor said the name, but we couldn't even pronounce it, let alone understand it," said Singh.
What made things worse was the lack of any guidance. "People remark that such children are not normal or that it's bad luck.
But who tells you what help is available?" Singh asked. With two children who needed different kinds of support, life hasn't been easy. The family income of around Rs 12,000 barely covers food and rent. "Even diapers cost Rs 500 a month. That's a lot for us," she said. Her eldest son still struggles.
"He goes to school, but there is not much progress. Therapy takes two hours every day," she sighed. The younger son is in a better position now but is yet to get his disability pension approved.
"The paperwork is endless. Nothing moves," she complained.
These stories reveal what policy numbers often miss: disability does not come with a roadmap for low-income families. Instead, there's silence, judgment, ignorance and difficult-to-access systems.
Pratik Aggarwal, executive director of Astha, said: "Children with disabilities were among the first to be excluded when services collapsed. Yet, because Astha's model is rooted in hyperlocal systems and relationships, families and communities didn't wait—they responded. Big learning? Local systems only work in emergencies if they are built with communities, not delivered to them."