The Massachusetts Sibling Support Network: Supporting Siblings of People with Disabilities

Emily Rubin

The following is an excerpt from an article in The Shriver Center Spotlight (Volume 5/Issue 1/Late Summer 2012). Click here to read the full article (PDF).

Growing up with a brother or sister with a disability–whether the disability is emotional or physical, visible or hidden–is a unique, often challenging, and potentially rewarding experience. Nationwide, adult siblings of people with disabilities report that the sibling experience profoundly influences their childhood and adolescence, and shapes the type of individuals they become.

“Sibling involvement has been expanding among families of people with disabilities for several reasons,” explains Emily Rubin, Director of Sibling Support at the Eunice Kennedy Shriver Center. First, people with disabilities today have significantly longer life spans due to medical advances and overall improved health, often outliving parents who serve as primary caregivers. Second, since deinstitutionalization in the 1970s, people with disabilities are living at home longer, creating stronger sibling relationships. Third, state and federal funding options are decreasing, and sibling involvement is a natural outgrowth of cost-saving measures.

The Massachusetts Sibling Support Network (MSSN), of which Rubin is co-founder and president, emerged from concerns about the impact of disability on siblings, especially adult siblings who serve as primary caregivers, but also young siblings who are growing up alongside brothers and sisters with different abilities and needs.

Origins of the MSSN trace back to 2009, when an exploratory committee investigated the needs of siblings of people with disabilities across Massachusetts and the types of supports that existed to meet those needs. The committee soon expanded into a diverse network of adult siblings, parents of young siblings, mental health professionals, and sibling service providers, all connected to sibling issues on a personal or professional
level. In 2010, the committee evolved into the MSSN. Its mission is to support siblings of people with disabilities across the siblings’ lifespans by providing education, creating welcoming communities, and improving the range and availability of sibling support services in Massachusetts.

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Rubin explains that the sibling experience is influenced by many factors including parental attitudes toward the child with a disability. In general, the more accepting parents are of the child’s disability, the more accepting the siblings will be; likewise, if parents are angry or in denial about the disability, those sentiments tend to trickle down to the siblings as well. Other factors that affect the sibling experience include the
severity and type of disability, characteristics like birth order, sibling gender, and family size. Family culture also plays a large role; “culture” refers not only to ethnicity and race, but also independence, interdependence, caregiving expectations, and communication styles.

Rubin adds that sibling issues change in scope as siblings age. Young siblings may struggle to understand the impact of their sibling’s disability on their family, while adult siblings may find themselves navigating complex healthcare, housing, employment and benefit systems previously managed by parents.

Read the full article. (PDF)

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