Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities


Resources for Understanding the Sibling Experience

Brother and Sisters of People with Disabilities: Unique Opportunities, Unique Needs

During this lively large-group discussion led by Don Meyer of the Sibling Support Project, participants learned about the concerns and opportunities frequently experienced by siblings of people with disabilities, as well as implications for parents and service providers. Presented by the UC Davis MIND Institute.

Sibling Online Learning Modules: Why are Siblings of People with Disabilities Important? 

This course offers over 15 online learning modules for siblings of people with disabilities to explore available research, services, and supports. Topics include building relationships with service providers, person-centered life course planning, who should make important decisions, supported decision-making, navigating services for my sibling, and much more. Offered by Sibling Resources, a collaboration between Yang-Tan Institute of Cornell University, The Sibling Leadership Network, and SibNY.

Siblings Speak: Maddy and Nathan

In this brief video from the Health Information Center at PACER, Maddy talks about what she wishes more people would understand about her brother, Nathan, what she is most worried about, and more. 

Resources on Sibling Roles and Needs

Sibling Advocacy Toolkit 

This toolkit focuses on the unique roles that siblings play in advocacy for people with disabilities. From connecting with other siblings to make change, to visiting with legislators, siblings offer perspectives that have not always been included in traditional forms or methods of advocacy. Published by the Sibling Leadership Network, this toolkit emerged out of Sibling Policy Forums for adults with disabilities and their siblings that were held in Illinois in March 2014 by the Institute on Disability and Human Development, University of Illinois Chicago.

How to Let Young Siblings Know You Care

The Sibling Support Project asked 50+ adult brothers and sisters of people with disabilities the following: “When you were younger, what did your parents, family members, and service providers do to make you feel special and let you know they cared?” This resource sheet provides their responses in the form of a list of ideas that parents can use.

What Siblings Would Like Parents and Service Providers to Know

Even the most family-friendly agencies often overlook brothers and sisters of individuals with disabilities. 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. This resource sheet PDF presents a summary of the themes and recommendations from the discussion.

Resources for Planning and Decision-Making

Center for Future Planning, The Arc of the United States

The Center supports and encourages adults with intellectual and developmental disabilities (IDD) and their families to plan for the future. It provides reliable information and assistance on areas such as person-centered planning, decision-making, housing options, and financial planning. Available resources online include the handout, Tips for Siblings: Getting the Future Planning Conversation Started.

Impact: Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental and Other Disabilities 

An issue in the Impact series that looks at how people with disabilities are exercising and experiencing self-determination in the U.S. and other countries today, and at the emergence of Supported Decision-Making (SDM) as one way to support individuals with disabilities to exercise self-determination. 

Adult Sibling Toolkit, National Down Syndrome Congress

Just for adult siblings, this toolkit is designed to jump start conversations with parents about becoming more involved in their brother or sister’s life. Siblings can use this information to be an effective advocate and perhaps, caregiver, after their parents are no longer able.