The Sibling Leadership Network: Ethical Considerations and Policy Recommendations Impacting Sibling Caregivers

Abstract

The Sibling Leadership Network (SLN) is a non-profit organization dedicated to supporting siblings of individuals with disabilities. Siblings play an important role as caregivers in the disability community, but also deserve to be recognized as individuals with their owns needs, identities, and roles. One area in which we support siblings is through advocacy and support for sibling caregiver roles.Caregiving is misunderstood. It is providing someone with formal and informal care that may take the form of emotional, physical, or financial support. Caregiving can occur daily or even temporarily, depending on the experience of the individual. There is no one-size-fits-all definition of caregiving, but all care is essential and valued.The Family Medical Leave Act (FMLA) is a policy that allows employees to take unpaid time from work to care for themselves, their spouse, their parent, or their child. Siblings are not included, unless they are providing caregiving for an individual whose disability prevents them from caring for themselves. We believe that this needs to change to acknowledge the important role siblings play in each other’s lives.Home and Community Based Services (HCBS), funds services that allow people with disabilities to live in their community. HCBS is currently struggling with limited funding and a shortage of direct service providers. Investing in HCBS would decrease demands on family caregivers like siblings.