Supporting Caregiver Employees in the Nonprofit Sector

Five ways nonprofits can support — and retain — caregiver employees.

When my son with severe developmental disabilities was in high school, my former employer asked me to attend an early breakfast meeting with a potential grant funder. I explained that would be impossible: my son needed direct assistance every morning, and my husband had a previous scheduling conflict that day.

Though usually sympathetic to our family situation, my boss was annoyed and told me that I would need to directly email the grant funder, explaining why I couldn’t make the planned breakfast. Ultimately, we were able to re-schedule later, but that interaction left me shaking my head. I told my husband: “He’s a good guy but he just doesn’t get it.”

In 2023, the Centers for Disease Control and Prevention (CDC) issued a report suggesting that the prevalence of autism had risen to one in every 36 children — more than three times the reported 2004 rate. Children who receive an autism diagnosis by age four are fifty times more likely to receive services, and many of these children live at the family home past the age of 22. Some will still be at home with their middle-aged parents, most often single mothers, throughout their adulthood.

Of course, for me, these statistics are personal: my son, now 29, still lives at home with me, and since my husband sadly passed, I’m the solo parent in charge of his life. But the stats don’t lie: odds are that the number of employees who are parents of children with disabilities will eventually impact every workforce.

And here, it is also important to understand the prevalence of caregiving throughout our society. It is estimated that 1 in 5 adults serve as caregivers, almost a third of whom must provide intense caregiving for at least 20 hours per week. Considering the monumental amount of time many must commit to providing care for their loved one(s), it is imperative that nonprofits find new, caring ways to support — and retain — these employees.

But wait: accommodations for caregivers don’t just benefit caregivers themselves.

As part of our nonprofit sector’s strong commitment to an inclusive and diverse workplace, it is more crucial than ever for employers to recognize and support employees who are caregivers. Nurturing an environment that embraces differences and provides the necessary accommodations not only benefits the employees directly impacted but also contributes to the creation of an overall more positive, compassionate, and inclusive workplace for every employee.

That is, establishing pathways for those employees who face these challenges daily also builds the overall internal infrastructure of support for when other employees face temporary medical or caregiving issues. After all, disabilities can and will crop up at any time: you might have a broken leg after a car accident or be bedridden due to pregnancy. Both of these situations are temporary yet still might require accommodations, especially if travel outside of the home represents any aspect of the employee’s job responsibilities.

Other accommodations can be even more temporary: say a caregiver employee needs the day off to move their elderly mother from her home to an assisted-living facility. Your employees need to know that this is not only something that they can request but something that you encourage them to seek out.

Basically, what we’re talking about for HR policy is an approach that, in architectural terms, is referred to as a universal design model. Universal design means making accessible elements that can help all users at some point in their lives. Universal design elements might include curb cutouts, elevators, or entrance ramps: not only do these elements help people with chronic mobility issues, but they also help someone pushing a stroller, for example. If we think of universal design in terms of HR, we realize that baking these kinds of accommodations into our HR policies doesn’t just benefit caregiver employees. These accommodations benefit everyone.

Universal accommodations can go a long way in creating an organizational culture that not only says it cares about employees but actually provides practical, useful supports and structures. And ultimately, these changes can help retain nonprofit employees — especially those who might otherwise leave for the higher pay (but fewer accommodations) of the for-profit sector.

So what can nonprofits do to support (and retain) caregiver employees?

Of course, there are many ways that management can support its employees; universal accommodations represent one aspect that can be implemented in fairly simple ways. Here’s a breakdown of the top five ways nonprofits can support — and ultimately retain — caregiver employees. Feel free to comment below if you have additional ideas!

1. Provide Flexible Work Arrangements

One of the easiest (and low-cost) ways employers can support employees (especially those with children who have disabilities) is by offering flexible work arrangements. As we all learned during the pandemic, changing how we work is not only possible but can also yield enhanced productivity and creativity.

Flexible work arrangements¹ allow employees to balance the demands of work and caregiving, enabling them to attend medical appointments, school meetings, physical therapy sessions, or other necessary commitments during conventional work hours. These might look like implementing flexible hours, remote/hybrid work options, and even compressed workweeks. All of these strategies can help caregivers manage their responsibilities effectively without compromising their job performance.

Yet again, such accommodations not only benefit those employees with particularly challenging caregiving responsibilities but will be welcomed by other employees. Any parent, for example, may find that responding thoughtfully to emails after the kids are asleep is optimal, rather than trying to dictate an immediate response during the day.

However, before you rush out to codify your new practices in the HR policy and employee handbook, you might consider first asking employees which strategies they’d find the most helpful. They are, after all, the experts of their own experiences, and their responses might surprise you. Consider making this an ongoing conversation with your employees.

2. Promote Open Communication and Understanding

As alluded to in the previous point, something to keep in mind is that your assumptions — no matter how well-intentioned — can be wrong. Supervisors shouldn’t presume they understand either what employees are experiencing or what they need to be successful in balancing work/life responsibilities.

Here, I’ll offer my own experience as an example. Throughout my career, some supervisors have wanted to share with me their own stories of what it was like to have a child with a learning disability or an “inspirational” story about a high-functioning nephew with autism who now works as a software coder. Again, this type of personal sharing is presumably well-intentioned but ultimately not helpful. I sometimes felt that these individuals were not really listening to me or were even minimizing my situation, which was and continues to be much more severe than what they had experienced or described.

Obviously, no one wants to be accused of either not listening or of minimizing their employees’ experiences. So one way you can counteract this unintentional impulse is by firstly making sure that you treat your employees as individuals, not as universal tropes. And when they are discussing their experiences, make sure you use active listening techniques while asking appropriate follow-up questions to open the discussion. Let them lead the way.

More than anything, it is crucial to note that establishing a culture of empathy and understanding helps build trust, ultimately making it easier for employees to seek assistance when necessary. Regular, one-on-one, private check-ins and discussions about individual needs can go a long way in fostering a supportive workplace.

3. Implement Employee Assistance Programs (EAPs) and Mental Health Support

Employee Assistance Programs (EAPs)² can be valuable resources for employees facing unique challenges, especially those related to raising children with disabilities. EAPs typically offer counseling services, support groups, and local referrals that can help employees navigate the emotional and practical aspects of caregiving.

After all, it can be incredibly stressful — even traumatic at times — to be responsible for someone else’s care. And the science backs this up. According to a 2020 study, parents of children with developmental disabilities have an increased likelihood of developing mental health problems, for example.

Of course, services to aid employees are necessary to promote employee wellbeing overall. By advancing the availability of EAPs and destigmatizing the use of mental health resources, employers can contribute to the overall well-being of their employees and their families. This might look like something as simple as supervisors (if they feel comfortable) sharing that they have a therapist appointment — instead of labeling it as a more general “medical appointment.” However, it might also look like staff meetings or trainings devoted to mental health and wellbeing.³ Something as simple as implementing additional mental health trainings further reinforces that management really understands its relevance to overall health and functioning.

If you have the budget for it, you might even consider paying for a commercial provider of navigated support as part of your health and benefits package.⁴ Remember, the nonprofit sector doesn’t even come close to the for-profit sector in terms of pay, so sometimes the best way to retain employees can be to offer additional benefits that slip through the for-profit sector’s cracks.

4. Create Parental and Caregiver Support Networks

Facilitating the formation of parental/caregiver support networks within agencies or networks of smaller organizations can be a powerful way to provide emotional and practical assistance to employees, especially those who have children with disabilities. Connecting employees who face similar experiences allows them to share advice, resources, and coping strategies, among other things. This sense of community reduces commonplace feelings of isolation and ultimately helps to create a supportive work environment.

For me, I have found some good aides, programs, and services I didn’t know about from participating in a variety of different support groups. When my son was young, I tended to participate and find the most community through in-person groups. However, with the current prevalence of the internet, I now more often use virtual network groups on Facebook and other social media platforms.

If you choose to create a support or resource group within your nonprofit (or, perhaps a circle of nonprofits), it can be helpful to offer these meetings during lunch time or after hours. If you want to create these yourself, you can either assign a volunteer employee to run these meetings, or, if you have the budget, you might even hire an outside consultant. Of course, there are also many national, local, and/or virtual networks for employees to join — you don’t have to build the wheel from scratch, as it were.⁵

5. Look to Extend Financial Assistance and Insurance Benefits

In an attempt to support their employees, employers must recognize the financial strain that often accompanies caregiving, including raising a child with disabilities. As such, employers might explore offering additional financial assistance and enhanced insurance benefits — if their budget permits. This may include subsidies for therapy or medical expenses, flexible health spending accounts, or even insurance coverage that specifically addresses the needs of persons with disabilities.

Of course, any conversation around financial assistance probably leads to the inevitable question: “That sure sounds nice, but how do we pay for it?”

Well, one of the things you might think about is discussing this need in candid — but respectful — conversations with your funders. As we all are too probably painfully aware, grant funders are often too focused on paying for programming while being reticent to pay the staff needed to actually administer and implement said programming.

However, many in the sector are calling for funders to help “nonprofits develop more holistic grant programs.” For the health of our people, we must continue to push funders to provide operational support so that we can equitably pay our employees.

Accommodations for one, accommodations for all!

The bottom line is that your workforce will inevitably include many different types of caregivers, including parents of children with disabilities or other special needs. By intentionally establishing an organizational culture that recognizes this reality and provides the necessary individualized support, you will have highly motivated and dedicated employees who will want to stay on at your nonprofit and help further your important mission.

And remember, supporting and retaining employees is ultimately a question of organizational sustainability. After all, a nonprofit is only as strong as its people: let’s make us stronger together!

Footnotes:

1. Flexible work arrangements can also be helpful for employees who are dealing with grief. For more, check out Working through Grief. ↩︎
2. For more, check out this EAP template! ↩︎
3. Check out this article on The Importance of Self-Care as Self-Defense! ↩︎
4. For example, Undivided offers 1:1 navigation of government benefits, public education/IEPs along with advocacy services for a membership fee. ↩︎
5. For example, here is a Facebook group as well as a national network, both of which I’ve found particularly helpful. ↩︎

About the Author

Michelle K. Wolf

Founding Executive Director at JLA Trust | More Posts

Michelle K Wolf is the Founding Executive Director of JLA Trust, a nonprofit based in LA County for that provides affordable special needs trustee services for persons with disabilities, which now has 188 enrolled beneficiaries and over $11 million in pooled assets. Pooled trusts are an easy way for people with disabilities to have professional trustee services to legally supplement their government means-tested benefits.

She was formerly the Director of Serving the Vulnerable for The Jewish Federation of Greater Los Angeles, and in 2005, she co-founded HaMercaz, an innovative multi-agency collaborative one-stop model that helps families raising children with special needs. She is also a former Adjunct Lecturer at the USC School of Social Work on Grant Writing for Social Workers.

As a parent of an adult son with cerebral palsy, she writes on topics related to intellectual/developmental disabilities and she is also a member of the Self-Determination Advisory Committee for the Lanterman Regional Center.

• Michelle K. Wolf

  https://blueavocado.org/author/michelle-k-wolf/

  Working Through Grief: How to Build a Supportive Workplace