The hidden strain of special-needs caregiving on today's workforce

• Key Insight: Discover how treating special-needs caregiving as a workforce issue shifts benefits strategy.
• What's at Stake: Rising caregiver burnout risks talent loss, reduced productivity and higher benefits costs.
• Expert Quote: Meg Shea: Without employer support, caregivers can't sustain work–life balance.
• Source: Bullets generated by AI with editorial review

Employers are working hard to understand the burdens on caregivers — but those caring for loved ones with special needs face a number of unique challenges that often go unnoticed in the workplace.

Those responsibilities are like having a second full-time job, according to a new study by New York Life Group Benefit Solutions, which highlighted how gaps in workplace support can add to the stress that caregivers already face.

Sixty-one percent of caregivers supporting someone with special needs spend six or more hours a day providing care, and more than a third have done so for at least six years. 

"Without the right support, it's nearly impossible to maintain that balance," says Meghan Shea, vice president and head of distribution at New York Life Group Benefit Solutions. "Employers who recognize caregiving as a workforce issue, not just a personal one, can make a meaningful difference by supporting employees in their personal lives so they can thrive professionally."

Read more: Exclusive research: The caregiving benefits employees need

Shea emphasized that caring for someone with special needs is oftentimes a lifetime commitment, especially for those caring for a child or sibling. At the bare minimum, employers need to be flexible with work schedules, she added, though inclusive support is essential. 

Companies "should be thinking about all of the ongoing administration and mental stress that is placed on those caregivers," Shea says.

According to the survey, employees caring for special needs dependents face longer caregiving journeys and deeper emotional strain than other caregivers. There's also an added economic impact: 54% struggle to cover basic expenses due to caregiving costs, while 31% delay paying bills. 

Shea says she recently appeared on a podcast with a co-worker who has a son with special needs, and she talked at length about how much she valued working for a company that supports flexible work arrangements and assists with finding resources and coordination of care. 

Career impact

According to the study, three in four special needs caregivers say it's impacted their ability to work or advance professionally, with 29% reducing from full-time to part-time work and 14% leaving the workforce altogether. Eighty-four percent of caregivers have experienced burnout, and 56% reported stress and anxiety. 

And while most caregivers know about their benefits,  just 68% are using them. Employers should rethink how they support this segment of their workforce to bridge the gap between awareness and accessibility. 

"I think that we see the same sort of stigmatism sometimes with mental health," Shea says. "People know they have benefits, but do they really feel like they can use them for that?"

In order to increase employee engagement with caregiving benefits, company leaders need to talk about these programs throughout the year, and not just during open enrollment, Shea says. 

"You need to be interacting with employees in the moments that matter — when they're taking a leave or returning from a leave," Shea says.

Read more: Exclusive research: Caregiving support boosts recruitment and retention

In the study, caregivers were clear about what they need most from their employers — backup or emergency caregiving support (49%), workplace flexibility (44%) and financial planning assistance (43%). Respondents also said they would like to get help navigating complex systems such as medical care, education and government benefits. 

She said it's also important that employers create an environment in which employees feel comfortable talking about their caregiving responsibilities. She pointed out that 22% of caregivers have not told their employers about their caregiving role. 

Shea says there often isn't a process for disclosing this information, and some people just don't feel comfortable sharing that they are a caregiver. According to the Society for Human Resource Management, one in five working caregivers have been treated poorly at work because of their caregiving responsibilities, and 22% say there is a negative stigma around being a caregiver at their organization.

Getting more people to open up about their caregiving duties would be a win for both employees and their companies, Shea says. 

"No. 1, an employer can know that this is a really prevalent thing within their population, and they can focus on that benefit," Shea says. "And No. 2, that opens up a dialog between the employer and employee that can lead to getting that person better support.

"If we can create cultures within employers that increase people feeling comfortable sharing that they've taken on caretaking duties, I think that would be like a really good outcome of bringing awareness to this topic."