Written by Dr. Katie Arnold, Executive Director, Our Place
The sibling relationship is an enduring bond that has a profound influence throughout a person’s lifetime. Our sibling relationships are typically the longest relationships we have with another person. Most of us outlive our parents and meet our long-term friends and partners later in life. Siblings serve as the thread throughout our lives, with ups and downs along the way—times when they are close and other times when they drift apart.
Childhood Experiences
In childhood, siblings are often each other’s first friends and playmates as well as earliest rivals and competitors. For people who grow up with a brother or sister with a disability, these formative years can be shaped by additional responsibilities, complex family dynamics, and sometimes feeling overshadowed by the needs of the child with a disability.
Support for siblings of people with disabilities during these early years is important yet not always acknowledged. Siblings can benefit from open conversations, chances to ask questions, and peer connections that help them process their experiences and feel understood. Programs like SibShops connect young siblings with peers who ‘get it,’ easing isolation and letting them be kids—support that’s vital early on and needed well beyond childhood.
Siblings as Caregivers
For siblings of people with disabilities, especially intellectual and developmental disabilities (IDD), the relationship in adulthood often brings new responsibilities. In the United States, 72% of individuals with IDD live with their families and in 24% of these households, caregivers are over the age of 60. While people with disabilities are living longer and family caregivers are aging, siblings often take on a more crucial role as parents become less able to support their adult child.
Siblings often become the next generation of supporters and caregivers for their brothers and sisters with disabilities. The learning curve is steep. Siblings don’t live and breathe the day-to-day details of care over a lifetime the way their parents do. Also, information does not always flow naturally from parents to siblings, yet there is often an assumption that siblings will step into the shoes of parents and take on their role.
Siblings who take on caregiving often juggle a wide range of responsibilities—from managing daily needs and healthcare to providing emotional support—while also navigating their own careers and personal lives. Many become the ultimate “club sandwich generation,” caring simultaneously for aging parents, their own children or families, and their brother or sister with a disability. This triple layer of responsibility can heighten financial strain, increase stress, and lead to isolation, particularly when compounded by the challenges of navigating complex service systems.
The Need for Future Planning
Future planning is a process that helps families look at the big picture while also determining what needs to be done right now. It addresses all areas of life—social connections, education and employment, housing, financial and legal matters, and other personal needs and goals. Importantly, it brings the whole family together for dialogue and collaborative decision-making. Families, including people with disabilities, have been shown to have better outcomes when they intentionally plan for the future.
Starting the difficult dialogue about the future is often the hardest part for families. Once the conversation begins, families can gather momentum for more discussion over time. Tools like The Future is Now curriculum help break down the steps to planning and specifically include siblings in the planning process, ensuring that every voice is heard and valued. Also, The Arc’s Center for Future Planning has information and resources for families, including an online tool called Build Your Plan that allows families to work through a process. Another resource is the Sibling Leadership Network, that provides information and support for siblings of individuals with disabilities.
How Employers Can Support Sibling Caregivers
To meet the growing demands sibling caregivers face, they need more support than they often receive—especially in the workplace. Employers have a unique opportunity to step in by recognizing these dual roles and providing meaningful resources and accommodations. By doing so, they can enhance retention, boost productivity, and promote overall employee well-being.
1. Include Siblings in Family Leave Policies
Most caregiving policies center on children or aging parents. The Department of Labor clarified that siblings may be eligible to take job-protected leave under the Family and Medical Leave Act (FMLA). Employers can update leave and benefit policies to explicitly include siblings with disabilities ensures employees can fulfill family responsibilities without jeopardizing their careers.
2. Offer Flexibility
The unpredictability of caregiving—emergency medical appointments, service disruptions, or health crises—requires flexibility. Remote or hybrid options, adjustable schedules, and caregiving leave allow employees to manage their responsibilities while continuing to grow professionally and contribute meaningfully to their organizations.
3. Provide Resources for Caregiving and Planning
Employers can offer Employee Assistance Programs (EAPs) that include counseling, caregiving resources, and information to help navigate the complex systems of supports and services for their aging parents and siblings with disabilities. They can also provide information and tools for future planning, helping employees prepare for transitions before a crisis occurs.
By embedding these supports, businesses help sibling caregivers remain fully engaged in their work while meeting vital family responsibilities.
Looking Ahead
Siblings of people with disabilities are lifelong allies, advocates, and problem-solvers—often stepping into caregiving roles that extend for decades. Supporting them through both the demands of today and the planning for tomorrow is a smart investment in stronger, more caring communities because their role truly matters.