In the United States, there are over 4.5 million people who have special health, developmental, and mental health concerns. Most of these people have typically developing brothers and sisters. Brothers and sisters are too important to ignore, if for only these reasons:
• These brothers and sisters will be in the lives of family members with special needs longer than anyone. Brothers and sisters will be there after parents are gone and special education services are a distant memory. If they are provided with support and information, they can help their sibs live dignified lives from childhood to their senior years.
• Throughout their lives, brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future, and care-giving demands. Brothers and sisters also face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve.
Despite the important and life-long roles they will play in the lives of their siblings who have special needs, even the most family-friendly agencies often overlook brothers and sisters. Brothers and sisters, often left in the literal and figurative waiting rooms of service delivery systems, deserve better. True “family-centered” care and services will arrive when siblings are actively included in agencies’ functional definition of “family.”
The Sibling Support Project facilitated a discussion on SibNet, its online group for adult siblings of people with disabilities, regarding the considerations that siblings want from parents, other family members, and service providers.