Tamar Heller, Head of the Department of Disability and Human Development, University of Illinois at Chicago and director of its University Center of Excellence in Developmental Disabilities for the State of Illinois explains why the siblings of those with an intellectual disability can play a key role in supporting their brothers and/or sisters

Tamar Heller and her sister Daphne Ron

Siblings of adults with intellectual disabilities (ID) are an untapped resource in supporting and advocating for their siblings. At the same time many of these siblings that are playing large roles in the lives of their brothers or sisters with disabilities also would benefit from recognition and support for these roles. Generally siblings are the most long-lasting relationships, as siblings often grow up in the same households and outlive their parents. Most individuals with intellectual disabilities live with their parents much of their lives. As the parents age, siblings play a larger and larger role (Heller and Kramer 2009). For example, in the US over 72% of individuals with ID live with their families, and over 25% of these family caregivers, who are mostly parents, are over the age of 60 years (Braddock et al. 2012). At the same time there are long waiting lists for services, particularly residential supports. A further trend is the longer life expectancy of people with ID, resulting in increased chances that they will outlive their parents. Hence, the role of siblings is taking on greater and greater importance. Yet siblings are often overlooked by the service system.

Experiences of siblings over the life course

The nature of sibling relationships varies over the life course. Siblings with and without disabilities often experience a similar family life, as they tend to grow up in the same households. Yet, they may also experience family life differently because parents and others may treat the child with disability differently. Over time, the role of siblings evolves against the backdrop of the family system. Earlier research often focused on negative aspects, such as the guilt for not being disabled and anger and jealousy over the attention paid to the sibling with a disability. Some studies reported somewhat higher depression and behaviour problems in children who had siblings with a disability (Rossiter and Sharpe 2001). However, other studies have reported positive outcomes. Many siblings report that having a sibling with a disability is a gift and has helped them feel more responsible and sensitive to others’ needs. They report affection and positive regard for their brothers and sisters. A recent on-line study in the US reported that siblings of adults with ID have good health, low depression and report rewards of having a sibling with disabilities (Hodapp and Urbano 2007).

During childhood the roles of siblings often focus on playing with each other, with the older siblings watching out for the younger ones. When there is a child with intellectual disability, over time the sibling without a disability, even if younger in age, often acts more like the older sibling. The relationship often becomes more hierarchical over time due to the abilities of the brother or sister with a disability in childhood, and later on. Yet, the relationships among siblings with and without disabilities tend to be positive, with frequent contact into and in adulthood (Heller and Arnold 2010).

In early adulthood, most siblings without disabilities launch out of the family home and move into such adult roles as having children and working in paid employment. On the other hand, most adults with disabilities live with their families for a much longer period of time. As they age and parents can no longer provide care, siblings often become the primary caregivers and, in some cases, actually end up co-residing. A study conducted by Easter Seals [a charity in the US], found that 14% of siblings of adults with intellectual and developmental disabilities were co-residing with their sibling with a disability (Easter Seals 2013) and 23% were their primary caregivers.

Although future planning for the time when parents can no longer provide care is critical, many families of adults with intellectual disabilities put off making such plans and discussing future options with their other children (Heller and Kramer 2009).

In their role of supporting and advocating for their brothers and sisters with a disability, siblings also have support needs. They report wanting information about their sibling’s disability and service options and about future planning, including housing options and financial and legal planning (Heller and Kramer 2009). They have many concerns about the service system and gaps in residential and employment support for their relative. Other concerns focus on making sure that the voice of their siblings is heard and that they have a social life.

Siblings have often been ignored in family support policies and practices. Providers seldom engage them, and they are an untapped resource. Siblings of people with disabilities can benefit from supports directed at them. Many siblings would like to participate in educational forums, sibling networking opportunities, on-line discussion groups, and support groups targeted to them. Future planning educational programs, such as the Future is now (Factor et al. 2010; Heller and Caldwell 2006) help siblings with and without disabilities and their families engage in future planning for the time when parents can no longer be the primary caregivers. On-line chat-room resources such as SibNet enable siblings from around the world to voice their experiences with their brothers and sisters with a disability. Finally, such organizations as the Sibling Leadership Network provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their families. In the US it has grown to a network of many state chapters, leaders of sibling groups and organization, families, advocates and professionals.

As a sibling of a sister with intellectual disabilities I have seen the important role that I have played in her life, from advocating for her formal services, to simply being available for daily phone calls. At the same time she has had a profound influence on my life, as I have chosen a career in the disability field which undoubtedly has been shaped by growing up with her.

This article was supported in part by Grant H133B130007 from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.

Tamar Heller, Ph.D., Professor, is Head of the Department of Disability and Human Development, University of Illinois at Chicago and director of its University Center of Excellence in Developmental Disabilities for the State of Illinois. She also directs the Rehabilitation Research and Training Center on Aging with Developmental Disabilities: Life span Health and Function and projects on family support and health promotion interventions for individuals with disabilities. One of these projects is the Special Olympics Research Collaborating Center.


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