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

Siblings of people with developmental disabilities want opportunities to connect with other siblings, information about their brother’s or sister’s care needs, assistance with caregiving responsibilities, and support for future planning (Arnold, Heller, & Kramer, 2012). Siblings are often overlooked, however, and receive very little support. While many support programs have been created for people with disabilities and their parents, few support groups exist specifically for siblings.

I (Nathan Grant) was inspired to find ways to support siblings from my personal experiences with my twin brother, Nik. Nik has a rare genetic condition called mucopolysaccharidosis (MPS) II, also known as Hunter syndrome. Growing up, I found that although many hospitals and organizations publicized that their services were family oriented, family often meant only parents and spouses. While I have provided care for my brother and anticipate providing more care in the future, doctors and service providers have rarely included me in conversations and care plans. Furthermore, organizations that help people like my brother have hosted many informational events and support groups for parents, but almost nothing specifically for siblings. To help siblings connect with each other and find support, I created Siblings with a Mission in 2015, during my junior year of high school.

Siblings with a Mission is an international, nonprofit organization that supports siblings who have brothers and sisters with developmental disabilities and complex health conditions. We provide resources for siblings of all ages and those who support them, including parents, family members, health care professionals, and service providers. Through our resources, we hope to spread awareness of what it is like to have a sibling with a disability, celebrate the unique experiences of siblings, and help siblings build a strong network of support around the world.

Siblings with a Mission offers resources for siblings and sibling supporters of all backgrounds. We provide support through a story column on our website where siblings can post their stories and read stories from others. By exchanging stories, siblings can find advice and learn how other siblings navigate similar life experiences. In addition to our story column, we also organize a Facebook support group where siblings can communicate with each other and an online resource database where siblings can find resources for their families. Because many of our services are accessible online, Siblings with a Mission has helped siblings connect from countries around the world. Our online resources have been particularly helpful for teenage and young adult siblings who look for support online as well as for siblings of people with rare conditions who are unable to find other siblings with similar experiences in their local community. Our website provides a platform where siblings can share their stories and find support, anytime and anywhere.

Though we provide support to siblings of all backgrounds, we recognize that some siblings also want to receive resources that are tailored to their individual experiences. Therefore, we also offer diagnosis-specific resources on our website for siblings of people with autism spectrum disorder, Down syndrome, mucopolysacc-haridosis (MPS), cerebral palsy, bipolar disorder, and ADD/ADHD, as well as grief support.

You showed me I am not alone.

While siblings really enjoy our online resources, many have expressed interest in attending events where they can meet other siblings in person. Therefore, in 2017, we partnered with Cincinnati Children’s Hospital to organize our annual conference for siblings and sibling supporters called the Sibling Symposium. The Sibling Symposium features presentations about the experiences and support needs of siblings, a resource fair with local and national organizations, and sibling and sibling supporter breakout sessions. We believe other organizations can use our Sibling Symposiums as a model to provide support to siblings of all backgrounds, and we look forward to partnering with hospitals and organizations to host more Sibling Symposiums in the future.

In addition to our partnership with Cincinnati Children’s Hospital, Siblings with a Mission has also partnered with the Sibling Leadership Network to help increase support for siblings. The Sibling Leadership Network is an organization that provides siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and promote issues important to them and their families (Sibling Leadership Network, 2020). In 2018, Siblings with a Mission and the Sibling Leadership Network partnered to create an educational curriculum to inform health care providers about siblings’ experiences and strategies to support siblings. Our complementary missions have empowered us to raise awareness of siblings’ needs and improve health care and community resources for siblings.

Since we started, Siblings with a Mission has offered support to more than 400 siblings of people with complex health conditions and developmental disabilities in 27 states and 17 countries. We have published more than 80 sibling stories online, created eight informational videos about siblings’ experiences, hosted seven sibling workshops, and organized three Sibling Symposiums for hundreds of siblings and sibling supporters. We strive to implement innovative strategies to help siblings connect with each other and find support. As one sibling told us, “Siblings with a Mission has given me the opportunity to meet other kids who have a brother or sister with special needs. You showed me I am not alone.”

Siblings and sibling supporters can sign up to become members of Siblings with a Mission for free. By signing up, members will receive our newsletters with recently-published stories from siblings, research updates, resources, and upcoming events for siblings and families. We also post updates on our Facebook page and we are always looking for sibling stories to share.

With advances in health care, people with complex health conditions and disabilities are living longer. As parents age, care often transitions to siblings who may become the primary caregivers for their brothers and sisters. Accordingly, like people with disabilities and their parents, siblings also need a support system where they can find resources for various life experiences. Siblings with a Mission was created to address this need. By fostering an exchange of stories, we have helped siblings connect with each other and find support. We have helped make a positive difference for many siblings around the world. We look forward to sharing more stories and providing more support for siblings in the future.