Asian Journal of Psychiatry 56 (2021) 102544

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Asian Journal of Psychiatry

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Letter to the Editor

Caregiver’s perspective in the RPWD Act (2016) of India

To the Editor, from any arrangements which could provide rest and leisure to the
caregivers. The economies of "hidden cost" clearly state that despite
United Nations Convention on Rights of Person with Disabilities
being present on the worksite; people especially women who are mostly
(UNCRPD, 2006) recognized the multi-dimensional, complex and dy­
the caregivers in many cases have low productivity (Institute of
namic nature of the disability. It acknowledged the balanced role of
Women’s Policy Research, 2020). The burden of care results in sleep
’social’& ’medical’ model in limiting the opportunity and participation
deprivation, intolerance, agitation and low concentration putting the
of Person with Disabilities (PWD) (Forsyth et al., 2007)through the
person in danger at the workplace (Srivastava, 2009). To curb the
guidelines related to the quality of life, equality of work, pay, and
burden of care, the appropriate government should introduce the service
participation in health. The Rights of Persons with Disabilities (RPWD)
of "respite care". Studies across culture are in favor of respite care in
Act (2016) of India also substantially incorporated the articles of
minimizing the burden of caregivers (Vandepitte et al., 2016). Further,
UNCRPD in chapter 2 (Rights and Entitlements), Chapter 3 (Education),
the appropriate government with the help of officer in charge should
Chapter 4 (Skill Development & Employment), Chapter 5 (Social Secu­
enforce the 10-month training to caregivers which was designed by
rity, Health, Rehabilitation and Recreation), Chapter 6 (Special Pro­
Rehabilitation Council of India. The utilization of CSR funds as addi­
visions for Persons with Benchmark Disability regarding Employment)
tional remuneration to the employees who would look after their col­
and Chapter7 (Special Provisions for Persons with Disabilities with High
leagues’ child suffering from disability for a specified period. Sahay et al.
Support Needs). However, the caregivers (who have played and still
(2013) stated that caregivers in India demand more for financial assis­
playing the lead role in supporting PWDs) are deprived of any sub­
tance and daycare services. Channelizing funds of CSR and even the tax
stantial benefits.
exemptions to corporates for making such provisions in their organiza­
A caregiver or carer is a paid or unpaid person, family member or
tion will raise collective responsibility of the society to empathetically
immediate relative who takes care of the person suffering from any kind
aid caregivers of disabled.
of disability. The RPWD Act 2016 in chapter 1 define caregiver in section
To conclude, caregivers in the Indian context are parents and im­
2 clause (d) as "caregiver means any person including parents and other
mediate relatives or siblings. Though government legislation is pro­
family members who with or without payment provides care, support or
tecting the rights of the PWDs, there is a pressing need for the legislation
assistance to a person with a disability." Caregiver stays aside with the
for the caregivers. Incorporation of suggestions for the caregivers as
disabled member of the family and continuously put effort to make the
provisions is desirable. Here, the role of the developmental psychologist,
life easy. In due course, their social circle gets shrink, they compromise
psychiatric social worker and pediatrician come into picture that can
with their health and leisure time. Further, non-cooperation from other
guide the caregivers and guide the government to formulate better
family members, neighbours and job pressure triggers stress that results
policies to safeguard their rights to life, rest, leisure, social security and
in distress (Pathak and Subudhi, 2020). As human beings, caregivers do
most importantly health.
have all the human rights. As per United Nation Convention on Human
Rights (UNCHR) their rights gets severely compromised; especially, the
Source(s) of support
articles 3, 7, 24, 25 that speaks about right to life, equality before the
law, social security, rest, leisure, and adequate health. The RPWD Act
Nil
(2016) in chapter 5 "Social Security, Health, Rehabilitation, and Rec­
reation" in sec 24(1) ensured the economic capacity of the appropriate
government to help the PWDs. Sub-section 3, clause(i) talks about the Declaration of Competing Interest
caregivers allowance but remain silent on the amount and granting
authority. Angothu and Chaturvedi (2016) mentioned that the Gov­ Nil
ernment of India (GOI) provides tax benefits to caregivers on income tax
return through income tax India section 80DD. The amount ranges be­
Acknowledgement
tween Rs. 75,000–1, 25,000 depending on the nature and severity of the
disability. The other benefits that GOI provides are the child education
None
allowance which amounts to RS 36,000 if staying with the caregiver and
Rs. 1, 08,000 if the child stays in the hostel. However, the benefit is
limited only to the central government employees. Indian railways References
provide concession in ticket reservations to caregivers based on the type
Angothu, H., Chaturvedi, S.K., 2016. Civic and legal advances in the rights of caregivers
of train and class of compartment onboard (Indian Railways, 2020).
for persons with severe mental illness related disability. Indian J. Soc. Psychiatry 32
These benefits bring little ease to caregiver’s financial burden but are far (1), 28–34.

https://doi.org/10.1016/j.ajp.2020.102544
Received 31 October 2020
Available online 31 December 2020
1876-2018/© 2021 Elsevier B.V. All rights reserved.
Letter to the Editor
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Asian Journal of Psychiatry 56 (2021) 102544
Sahay, A., Prakash, J., Khaique, A., Kumar, P., Meenakshi, S.P., Ravichandran, K.,
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Abhijit Pathak, Ramakrishna Biswal*
Department of Humanities and Social Sciences, National Institute of
Technology, Rourkela, 769008, India
*
Corresponding author.
E-mail addresses: abhijitpathak29@gmail.com (A. Pathak),
rkbpsych@gmail.com (R. Biswal).