Caring For The Caregivers: Supporting Families Of People With Disabilities In The Workforce
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”
Millions of families across the United States quietly carry a profound and often invisible responsibility: caring for a loved one with disabilities, specifically intellectual and developmental disabilities (IDD)1. These caregivers—parents, siblings, and other family members—provide essential support for individuals with IDD, often providing daily care while also navigating complex service systems, advocating for inclusive opportunities, and planning for futures that often extends beyond their own lifetime.
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Juggling Work and Caregiving
Caregivers who work full-time balance the dual demands of paid employment and the persistent role of caring for their family members. Family caregivers often manage medical appointments, therapies, behavioral support, advocacy, and daily care routines outside of work hours. These responsibilities frequently leading to physical and emotional fatigue, stress, and burnout, particularly in workplaces that do not support caregiving responsibilities.
Family caregivers are a significant and frequently overlooked portion of the workforce. Many do not self-identify as "caregivers" and may not disclose their responsibilities at work due to fear of stigma or job insecurity. Despite these challenges, family caregivers remain deeply committed—both to their families and their professional roles—highlighting the critical need for workplace practices that recognize and support these vital yet often overlooked employees.
Employers Can Support Caregivers
Family caregivers are employed in all sectors—from corporate offices and government agencies to healthcare providers, retail, and nonprofit organizations. Employers can be a powerful force for change by recognizing and responding to the needs of their employees who have caregiving roles. Supporting these employees is a strategic investment in retention, productivity, and workplace equity. Employers can make a difference in a number of meaningful ways:
Flexible Work Arrangements — Allowing caregivers flexibility over their schedules can be transformative. This might include remote or hybrid work, flexible hours, compressed workweeks, or job-sharing options. These adjustments make it possible for caregivers to attend medical appointments, therapy sessions, and meetings—without sacrificing their jobs or performance. A culture of flexibility signals trust and respect, and it’s a key factor in preventing caregiver burnout.
Paid Family and Caregiving Leave — Many caregiving responsibilities are ongoing and long-term, especially when supporting someone with IDD. A paid-leave policy that covers a wide range of caregiving responsibilities demonstrates a broader understanding of family structures and long-term care needs. It also ensures that employees are not forced to choose between their income and the health and well-being of their family members.
Caregiver Support Programs — Employers can offer resources like care navigation services, mental health counseling, and financial or legal planning support tailored to caregivers. These resources can help employees navigate complex service systems, make informed decisions, and manage the emotional demands of caregiving. Even small actions—like publishing a caregiving resource guide or hosting lunch-and-learns—can make caregivers feel seen and supported.
Peer Networks and Employee Resource Groups (ERGs) — Creating caregiver ERGs provides an important sense of belonging. These groups give employees space to share experiences, connect with colleagues facing similar challenges, and receive peer support. Employers benefit too—by understanding their workforce more deeply, reducing burnout and turnover, and creating a more inclusive and productive environment.
Manager Training and Inclusive Workplace Practices — Managers play a key role in how employees who are caregivers experience the workplace. Training supervisors to respond with empathy, flexibility, and understanding can make a significant difference. Inclusive language, thoughtful accommodations, and nonjudgmental environments help caregivers feel seen and valued.
Many caregivers find themselves facing difficult choices when they juggle the demands of their job and the needs of their family members with IDD. Often, this means reducing their work hours to provide necessary care, which can lead to decreased income and limited career advancement. Some may opt for lower-paying or more flexible jobs that better accommodate their caregiving responsibilities but offer fewer benefits and less job security. In more challenging situations, caregivers may leave the workforce entirely, sacrificing financial stability, retirement savings, and professional growth. These compromises not only impact the caregivers’ economic well-being but also reduce the overall diversity and talent available in the workforce, underscoring the need for supportive workplace policies and practices.
Workplace Policies for Caregiver Realities
Workplace protections in the United States have not kept pace with the evolving needs of families. The Family and Medical Leave Act (FMLA), enacted in 1993, was a groundbreaking step in its time, but today it falls short. FMLA only applies to employers with 50 or more employees and offers unpaid leave— excluding a significant portion of the workforce. Even more critically, it narrowly defines “family member,” typically covering only parents, spouses, and children. Siblings, who often step into caregiving roles for people with IDD, are not specifically included. This definition does not reflect the diverse and evolving caregiving roles found in the disability community.
Workplace policies that recognize the lifelong nature of disability caregiving are needed. This includes expanding paid family leave, offering flexible work arrangements, and updating federal laws like FMLA to include siblings and other nontraditional caregivers. Unless action is taken, millions of caregivers will continue navigating the demands of their role without the support they deserve.
Caregiver-Friendly Workplaces
Employers have a unique opportunity to lead the way by building supportive, flexible, and inclusive workplaces that acknowledge caregiving as a core part of many workers’ lives. Family caregivers are valuable contributors to the workforce, yet too often their needs go unrecognized. From enacting thoughtful leave policies to fostering understanding through manager training and peer support networks, small changes can make a powerful difference. Implementing caregiver-focused solutions strengthens the workforce and supports the vital role caregivers play in our society.
1- While this article focuses on family caregivers of people with intellectual and developmental disabilities (IDD), many of the challenges and solutions discussed here are relevant to family caregivers more broadly. Caregivers supporting children, aging relatives, or others with chronic health needs face similar demands and could benefit from the same workplace supports.
This is a content was posted by Forbes EQ, contributed by Our Place.
