Opinion Who cares for the caregiver?

According to India’s Time Use Surveys (TUS) of 2019 and 2024, women continue to shoulder most unpaid domestic and caregiving responsibilities. In 2019, women spent an average of 299 minutes a day on domestic work, compared to 97 minutes for men. Five years later, little had changed — women’s time on domestic tasks declined only marginally to 289 minutes, while men’s fell to 88 minutes. In caregiving too, women devoted nearly twice as much time (137 minutes) as men (75 minutes). The data suggest that while the world moved on from the pandemic, women did not move on from care.

The burden of care is not distributed evenly. For households with persons with disabilities (PWDs), caregiving demands are more continuous, skilled, and emotionally intensive. The 76th round of the National Sample Survey (2018) shows that 62 per cent of persons with disabilities depend on a caregiver — and over 65 per cent of those caregivers are women. The family remains the primary site of support: Spouses provide 30 per cent of care, mothers 26 per cent, and daughters-in-law 10 per cent. Institutional or paid caregivers account for barely one per cent.

While the survey estimated persons with disabilities at 2.2 per cent of the population, global benchmarks tell a different story. The World Health Organisation estimates that 16 per cent of the world’s population lives with some form of disability. By that measure, India would have roughly 236 million persons with disabilities. Including family members who provide care, nearly one in four Indians is either a person with a disability or a caregiver for a person with a disability.

Caregivers, then, form a vast but unrecognised constituency — an invisible workforce that enables others’ rights, particularly the right to life with dignity guaranteed under Article 21 of the Constitution. For persons with disabilities, this right cannot be exercised without access to quality, dignified care; for caregivers, it cannot be sustained without recognition and support.

The Rights of Persons with Disabilities (RPwD) Act, 2016 made an important conceptual advance by defining a caregiver as any person — paid or unpaid — who provides care, support, or assistance to a person with a disability. This definition implicitly recognised two realities: That care is a form of economic labour, and that in India, it is overwhelmingly familial.

Under Chapter V, the Act envisaged a caregiver allowance for persons with disabilities with high support needs, which would indirectly compensate those providing care. Nearly a decade later, this provision remains unrealised. In the absence of a national framework, some states have begun to fill the gap.

The Delhi government recently announced a monthly assistance of Rs 6,000 for caregivers of persons with high support needs, aimed at providing economic relief and social security. Karnataka, in its 2024–25 budget, introduced a Carer’s Allowance of Rs 1,000 per month for carers of persons with cerebral palsy, muscular dystrophy, Parkinson’s disease, and multiple sclerosis — later expanding the list to include autism, intellectual disabilities, and deaf-blindness.

These initiatives mark a shift in how state governments view care — less as a private family responsibility, more as a public good. Yet their reach is limited, and their diffusion uneven.

While Delhi and Karnataka’s programmes reward caregiving through financial transfers, the VIKAAS Scheme of the Union government seeks to redistribute care itself. The scheme supports registered organisations running day-care centres for persons with disabilities — particularly those with autism, cerebral palsy, and multiple disabilities—thus providing structured spaces for skill-building and social interaction. This dual purpose not only supports persons with disabilities but also releases time for family caregivers to rest or work.

Together, these schemes reflect an emerging recognition that care must move from the household to the policy sphere. However, they remain fragmented responses to a systemic issue. India still lacks a coherent national caregiver policy — one that integrates financial support, respite services, training, and social protection.

Demographic change will make this omission harder to ignore. By 2050, the number of people aged 60 and above is expected to double globally to 2.1 billion, with most growth occurring in low- and middle-income countries such as India. The elderly sex ratio — already 1,033 women per 1,000 men in 2011 — is projected to reach 1,085 by 2031. Southern and western states will age faster than the northern heartland, creating new regional asymmetries in the demand for care.

As the population ages and disability prevalence rises, the need for caregivers will expand sharply. Without systemic measures, the responsibility will continue to fall disproportionately on women, constraining their participation in paid work and reinforcing gendered inequalities in time and income.

Care cannot remain an afterthought in welfare design. It must be treated as social infrastructure, as essential as health or education. A national framework for care — anchored in the RPwD Act and aligned with the principles of dignity and inclusion could bring coherence to the existing mosaic of schemes. It should include regular financial assistance to caregivers, accessible respite services, skill training, and integration with labour and social-security systems.

Recognising care as a constitutional right requires recognising caregivers as rights-holders, not merely as family members performing expected duties. Only when the labour of care is valued as work — and when those who provide it are supported can India begin to fulfil its constitutional promise of life with dignity for all.

The writer is a policy analyst at The Quantum Hub, specialising in gender, disability and climate change