The care-giving conundrum: How to look after the disabled

Disability is a dynamic and multidimensional public health issue of increasing importance. A deeper understanding of care providers is essential for planning and designing a support structure

By Palash Baruah, DL Wankhar
Published: Wednesday 06 January 2021

The World Health Organization in its document titled Evidence profile: caregiver support defines care-dependence “as the need for frequent human help or care beyond that habitually required by a healthy adult”.

Those in constant need of a care-giver are persons with disabilities (PWDs). In India, a person with disability is “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others”. Disability does not only affect the person who is disabled but also has an impact on the entire family because disabled people require physical help in performing their daily activities.

The novel coronavirus disease (COVID-19) pandemic has also thrown up a number of problems for PWDs and those who provide caregiving services to such persons.

There are about 25.8 million persons with disabilities in India, which is around 2.2 per cent of the total survey estimate of the population. Care givers or care takers are critical partners in the overall care and welfare of people with disabilities.

In India, under sub-section (d) of Section 2 of the Rights of Persons with Disabilities Act, 2016, a care-giver is “any person including parents and other family members who with or without payment provides care, support or assistance to a person with disability”.

According to the estimates of the 76th round of the National Sample Survey (NSS) of persons with disabilities-2018, around 37.72 per cent PWDs did not require services of a caregiver, while 0.26 per cent said they require the services of a caregiver but could not have access to them.

A large section (62.02 per cent) of PWDs said they had been using the services of a care giver.

But who provides these care giving services to those availing the service?

Caregiver services to PWDs; its requirement and availability (% share)

According to the NSS survey, spouse provides around 30.74 per cent of the care-giving services to PWDs, mothers 26.47 per cent, daughters-in-law 10.54 per cent, sons 9.49 per cent, daughters 4.16 per cent, hired care-givers 0.60 per cent, institutional care-givers 0.36 per cent.

More than 65 per cent of care-givers are females. As aptly remarked by the International Labour Organisation (ILO) in a document titled Care work and care jobs for the future of decent work, women as caregivers” model remains the dominant, normative construct for gender relations globally.

The principal role of men, it said, is to engage in paid work and provide food and shelter, and that of women is to care for and nurture the family. This is despite high or rising rates of labour market participation by women.

As a result, women who work for pay are commonly said to work a “second shift” or experience a “double day”, one at home and one at work.

In India too, the familiar benefits of family-based and co-residence care-giving exists. Care-giving is often home-based and provided almost entirely by family members who are not part of the formal healthcare system.

The service, which is generally unpaid and voluntarily given to disabled persons by their families or relatives or friends, is the backbone of long-term care. In most cases, the contributions of these informal caregivers go unnoticed, except by those who benefit from their care.

It is also a fact that the contributions of these informal caregivers are becoming indispensable and irreplaceable because of proximity, convenience, familiarity and affordability.

What could change in future?

The landscape of care-giving services is likely to undergo a change due to demographic transition, migration of people either for social or economic reasons, increase in participation of women in the workforce, increase nuclearisation of family, increase in life expectancy with the accompanying issue of some of the elderly likely to become disable, escalating costs of hospitalisation and institutional care leading to briefer hospitalisations and increase need for institutional / home care.

There is tremendous pressure on families and human resources are dwindling. More and more women are taking up employment outside the house, either to supplement the family income or contribute to the productive workforce.

The fear that they may be forced to cut down on work or make suitable adjustments to accommodate their caregiver responsibilities is becoming stressful. The responsibilities of caring often constrain their social participation and sometimes, it may necessitate their withdrawal from the work force. This is not a desirable scenario.

Looking ahead

Disability is a dynamic, multidimensional and diverse public health issue of increasing importance. With time, there will be a rise in the number of PWDs who would require the services of a care giver and in most cases they will come from hired care-giver. We are not too far from acknowledging that non-family sources of caregiving would steadily increase.

A deeper understanding of providers of care-giving services to PWDs is essential for planning, designing and evaluation of the support structure that exists within the system of care giving to PWDs.

The inherent complexity of organising and delivering coordinated care for the PWDs calls for reform of the care-giving system with the aim to provide a truly integrated, person-centric care which will involve a range of different organisations and providers, including both healthcare and socialcare providers. Incentivising care-giving services could be an option to bridge the requirement-gap and to lessen the burden on the female care-givers. 

Care-giving services should be brought within the ambit of the formal healthcare systems with specific targeted policies, programmes and assistance. There is a need for wider consultations, long-term preparedness in terms of policies and backed by a multi-pronged approach with supporting infrastructure.

At the outset, we need an improved system of data collection for a comprehensive database including the characteristics of PWDs, their varying needs of care-giving services and the availability of such services.

Views expressed are the author’s own and don’t necessarily reflect those of Down To Earth

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