As a mother of an 8-year-old autistic son, Lucknow-based Ashima Mehta* juggles between work and personal life like no ordinary mother. Since her child is among the high-support cases, she often worries about the child’s future and ability to survive independently despite getting constant support from family members.
Episodic stress, worrying, and caregiving have led to Mehta suffering depression lately, which often impacts her productivity at work. Though she has discussed her problems with managers, they haven’t been able to work out a solution since the company doesn't extend any support for children with special needs and rather is limited to offering basic maternity benefits.
“I can’t even remember how many times the thought of quitting my job has come to my mind,” Mehta said, adding that it is hard for her to find affordable and trustworthy third-party centres with trained caregivers.
Mehta is among the multitude of working parents who struggle to get support for children with special needs as the discourse around diversity and inclusion is limited to employees only. In fact, radical initiatives like medical support for LGBTQI+ partners and period leaves found their way into the corporate lexicon recently, post-pandemic.
There are very few companies in India, such as Tata Power, Accenture and Cognizant, that offer support to employees of children with special needs. Most recently in February, Procter & Gamble India announced its ‘Lead With Care’ programme to enable employees to avail of early preventive care and treatment for children impacted by specific neurodevelopmental, cognitive, behavioural or physical impairments.
ALSO READ | Period leaves policy undergo change as stigma continues to haunt women employees
The programme includes medical coverage across diagnosis, doctor consultations, treatment, and cost of medicines and devices, and builds on top of the existing medical support the company extends to all its employees and their families, including employees of the LGBTQI+ community.
The challenges
Human resources (HR) policy experts say there is very low awareness of the issue in corporate India currently, or even globally.
Sonica Aron, founder and managing partner of Marching Sheep, an HR consultancy, said ‘diversity’ management has been limited to representation by gender, sexual orientation, generation and people with disabilities among employees only.
“Employee life stage as a criterion, or their personal lives and its impact on their professional lives and productivity is a recent conversation,” she said, adding that organisations are at a nascent stage of sensitising their managers and employees on the ‘caregiving’ status of their colleagues.
Apart from awareness, resource constraint is also an issue. As per Plum’s ‘The State of Employee Benefits Report 2023’ that modelled data from over 2,500 policy initiatives, 30 percent of companies do not extend benefits to their employees' families. Here, families are defined as parents and children. One reason is perhaps cost, especially for small and medium-sized enterprises (SMEs).
Plum consults companies to also include new-age covers for various disabilities, including external and internal congenital conditions that may not be life-threatening. For example, Down syndrome, cerebral palsy or even autism.
ALSO READ | Companies push employees to adopt sustainable travel, reduce carbon footprint
“Earlier, it was hard to get these covers, but as insurance is becoming more inclusive, these can now be availed and it requires a shift in mindset,” said Sarthak Sinha, Plum's insurance advisor to enterprises.
A push is needed
In March 2023, India's white-collar sector saw a 35 percent spike in job openings for women compared to the previous year, primarily because women, who dropped out of work during the pandemic to become full-time caregivers, have now re-joined the workforce, as per talent management platform foundit. However, people like Mumbai-based Sagarika Mittal* were not among them.
Despite managing to resume work in 2021 post-pandemic, when she had left her position to, among other things, take care of her child with Down syndrome, Mittal had to give up her job a year later in 2022 as she was unable to return to her job since the child needed constant support.
She had exhausted her maternity leave and her company’s daycare centre did not have the facilities to cater to children with special needs. Mittal said she would have not quit had there been even a little support at the workplace for her special child. “I had to quit since there were so many ifs and buts,” she said.
Health insurance experts feel the absence of a comprehensive legal framework specifically addressing the rights of and support for caregivers of children with special needs can hinder companies from implementing effective policies.
ALSO READ | As pressure of going home without job mounts, IT graduates opt for placement platforms
“Global peers in developed countries often have well-defined policies and programmes ensuring comprehensive medical coverage, flexible work arrangements, counselling services and accessible resources for caregivers,” said Kinshuk Chaturvedi, vice president of retention at insurtech platform for employers Pazcare.
Indian companies have some catching up to do in terms of implementing policies and programs that cater to the unique needs of caregivers, he added.
(*name changed on request)
