Distress in households with CwDs

Pinky is a 25-year-old single mother, living with her one-year-old child and elderly parents in a rented room in Tughlakabad village in Delhi. The child has a vision impairment, the grandmother is on long-term seizure medication, and 55-year-old grandfather, a daily wager, is the sole breadwinner of the family. It is families in precarious situations like these that the lockdown has pushed to the brink. The majority of state-sponsored lockdown relief measures have failed to reach the family because of the disability of the child and lack of documents with the family.

Pinky says, “जब पहला लॉकडाउन हुआ तब लगा चलो तीन हफ्ता ही तो है, लेकिन जब बार बार बढ़ने लगा तब पैसो  की बहुत तंगी होने लगी. चार महीने का किराया सिर पे था, राशन नहीं था और खाने-पीने की बहुत कमी होने लगी, बच्चे को भी दूध नहीं दे पाते थे. लॉकडाउन में पियूष की तबियत बहुत ख़राब हुई, इसकी नानी को भी दौरे बढ़ने लगे, लेकिन कुछ सवारी नहीं चल रही थी तो कहाँ जाते. कुछ समझ नहीं आ रहा था.” (Translation: When the lockdown was announced for the first time, we thought we could manage since it was for a short period, but when the lockdown kept getting extended, we started facing challenges. Rent for four months was due, we didn’t have any stock of grocery and there was acute shortage of food; we could not even get milk for our child.  Piyush’s health deteriorated during the lockdown, but there was no source of income – where could we have gone? We couldn’t understand anything.)

The story of Pinky’s family is not an aberration; it is typical of many families of children and persons with disabilities, since the COVID-19 lockdown. Many of the families ASTHA works with are what we call ‘high support families’ — these are families with more than one child with disabilities, or are single parent or grandparent led. Families live with an average of five people sharing one ill-ventilated room, in a rented accommodation with just basic amenities, down narrow broken lanes, and share community toilets. The social determinants of urban slums render them susceptible to COVID-19. In conditions like these, physical distancing is impossible. Delhi has been a host city for millions of migrants, from the neighbouring states of Bihar, Bengal and Uttar Pradesh, who settle here for a wide range of reasons. According to Centre for the Study of Developing Societies (CSDS) data, 40% of Delhi’s population comprises migrants. It is with this population that ASTHA has been working.

During the lockdown, nearly 70-80% of families ASTHA reached out to were without ration cards and other important documents such as Aadhar cards. The government started an e-coupon system for temporary ration cards. Still an online process, lack of access to smartphones and long delays in approval of the process rendered the policy inaccessible to most. The digital divide was clear as Divyanhsu’s (a young child with Down Syndrome) father says, “हम कभी पढ़े नहीं, फ़ोन भी नहीं है, कहाँ से फॉर्म भरेंगे. किसी को १०० रूपये भी दिया फॉर्म भरने को, तब भी नंबर नहीं आया.” (Translation: We are not educated, and we don’t have a phone. How do we fill a form? Once we gave Rs 100 to someone to fill the form, but we still didn’t get our e-coupon.)

It was then that an ASTHA community worker took on the task. It was difficult as most parents did not have a phone, and she had to coordinate from her home for OTPs and upload documents. After the application process, a hard copy of the form was demanded, which was extremely difficult for families to produce during the lockdown. However, after constant attempts and a long wait, many families acquired rations.

An evolving strategy

Historically, it has been seen that children with disabilities have been isolated, neglected and often confined to their homes. This is more so for children with severe disabilities living in cramped houses of narrow lanes in urban slums of the city. It takes months of work and counselling of parents to enable a child with a disability to come out of the confines of their home; this is a journey. However, Seema, a senior community worker, says that she has been surprised during this lockdown. She shares, “It seems all of our previous training has been used, parents have shown so much interest in helping their child learn. Even in their homes, families are trying to work with their child, be it hand functions, mobility, reading, independent sitting, feeding and other Activities of Daily Living (ADLs).” ASTHA has always focused on disaggregating the specialised therapies so that they can be done even in resource-constrained settings. ASTHA’s 27 years of experience has shown that there is a great amount of resilience in families. It only takes some support and someone to listen to them, and parents do try a lot.

The past 8-10 weeks have been full of reflection and thinking. We have been asking ourselves ‘What does Early Childhood Care and Development(ECCD) mean in times of a disaster and a humanitarian crisis like this?’ The team has discussed strategies of integrating education and ECCD within the daily routines of the family. Other discussions have been around active listening, being non-judgmental and a realisation that these are the times when families, and especially women of the household need a listening ear. Families might be anxious and our work, as always, has to be in line with the context of the situation and families. Amidst the reports of an epidemic of mental health issues and violence, an isolated focus on education would be futile.

Overnight, the lockdown pushed many independent families into crisis. Sunder is a child with a severe disability, and his mother says, “चार महीने का किराया अब सिर पर है. घर में एक ही इंसान है कमानेवाला, कैसे करेंगे? आस्था तो मदद करेगा, पर मैडम आपसे भी कितनी बार राशन और दवाईया मांगेंगे?” (Translation: We haven’t paid rent for the last four months. There is only one earning member in the family. How will we manage? ASTHA is helping with ration and medicines, but how many times can we ask you for support?)

In addition to rations, livelihood, employment being affected, the lockdown has severely hit the dignity of the vulnerable. This gets tougher when there is a child with a disability, or there are women or grandparent-led families. The lockdown has forced many to stand for hours in long queues in the sweltering summer heat of Delhi for their share of grains, with a child with disability in their arms.

Now, ASTHA has gradually started to open its centres for staff. This was prompted by the realisation that children need to be given more learning materials for their work at home, and that our thinking has to move beyond technology. It is important that we make one connect with all families once. It seems the pandemic is here to stay and we must ensure we collectively address it with all our might.

Responding to a disaster

The recent NSS data reveals that almost more than 75% of Persons with Disabilities (PwD) are bereft of any aid from the government. The penetration of Disability Certifications is as low as 28%, and there are high disability-related out-of-pocket expenditures. These are the silent crises that happen all the time when societies do not make adequate provisions for citizens who have specific needs and requirements. It is important to understand that the present disaster builds upon a silent crisis that has been ongoing for many years.

Disability cuts across all social groups, including the migrant population, and at times it is difficult to identify where people with disabilities are in a city like Delhi. These are the questions that have confronted the disability community as well as planners. Families that have a member with a disability require more care, yet are excluded from services and institutions of society, and must bear disability-related expenditure in addition to their general expenditure. In India and in places like Delhi, it has meant a lack of habitation and rehabilitation services and the state entitlements and social security support are so meagre that families can’t survive on just that.

India and its states have long invested and built myriad systems and community-driven cadre who can be instrumental in the ‘building back’ of this disaster. ASHAs, Anganwadi workers, School Management Committees and systems of PDS, MDMs, ICDS, would lead India’s efforts in this humanitarian crisis. It is the need of the hour to proactively reach out to all vulnerable groups to mitigate the apathy and isolation.

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