Don Meyer and Tom Fish
For the Services and Supports Work Group
The purpose of the White Paper is to develop recommendations for needed services and supports for siblings of brothers and sisters with developmental disabilities. This paper is a product of the services and supports work group at the Sibling Leadership Network Conference held in Washington D.C. on November 9 and 10, 2007. The Services and Supports Work Group articulated principles guiding their work, delineated needs for and benefits of various services and supports, and made recommendations for low cost and high impact programs and services.
Principles Guiding Services and Supports
- Supporting siblings with and without disabilities benefits the entire family and society as a whole.
- Siblings of individuals with disabilities need information, opportunities to share, training, and opportunities for guidance.
- Siblings have a unique perspective due to our life experience that should be valued and recognized.
- Siblings should be respected in their choice to be lovingly involved at whatever level and in whatever way they choose.
Summary of Service and Support Issues
In the United States over 4.5 million people have developmental disabilities . Most of these people have typically developing brothers and sisters. These brothers and sisters are too important to ignore, if for only this reason:
Siblings will be in the lives of family members with disabilities longer than anyone. Brothers and sisters will typically be there after parents are gone and special education services are a distant memory. Theirs is a relationship that can easily exceed 65 years. When provided with support and information, these brothers and sisters can help their siblings with disabilities live dignified lives from childhood to their senior years.
Siblings of people with disabilities share most of the concerns that their parents experience, including isolation, a need for information, guilt, concerns about the future, and caregiving demands. Brothers and sisters also face issues that are uniquely theirs, including resentment, peer concerns, embarrassment, and pressure to achieve. Yet, compared to what is available for parents, services and supports for siblings are almost non-existent.
Today’s siblings assume a larger role in the lives of people with disabilities than in previous generations. This is due to at least three converging social phenomena:
- First, because of advanced medical technologies, people with disabilities now routinely outlive their parents.
- Second, current social policies encourage people with disabilities to live and work in the community. While these are desirable policies, it means that adult siblings assume the in loco parentus roles previously played by the state.
- Third, these changes occur at a time when many states—facing diminishing dollars for social services—find housing and employment options for people with disabilities scarce. Currently, more than 70% of adults with intellectual disabilities remain at home after high school.
Consequently, siblings of the baby boom and post-baby boom generations are called upon to be more involved in the lives of their brothers and sisters with disabilities. More than anyone, they will be the most important source of information regarding their vulnerable brothers and sisters. “The types of support that these relatives–primarily adult siblings–will need once they assume caregiving responsibility may well be different than those of aging parents, and will be a growing concern for the service delivery system (Seltzer,& Krauss, 1995).”
Services and supports specifically for brothers and sisters have a long-lasting impact on families and the lives of people with disabilities. Seventy-five per cent of adult siblings who attended a peer support and education program for siblings as children reported that the program affected their adult lives and the adult relationships they have with their siblings with intellectual disabilities. These programs “serve as protective factors for siblings of individuals with disabilities, a population who is frequently considered at-risk” and the “positive results last into adulthood.” The study concluded, “The positive effects are not only apparent, but enduring (Johnson & Sandall, 2005).”
Providing siblings with services and supports is a low-cost, high impact means of improving the lives of people with disabilities because supported, informed siblings are more likely to remain lovingly involved in their lives as adults—and when their parents no longer can. But others benefit from these efforts as well:
- Typically-developing siblings are reassured when they have the skills and know-how to advocate for their brothers and sisters;
- Parents enter their senior years knowing that their children with disabilities will be cared for when they no longer can;
- Service providers serving adults with disabilities benefit from having siblings as active partners–and siblings are an especially important source of information about their brothers and sisters; and
- Taxpayers benefit because adult siblings who are involved in the lives of their siblings with special needs will reduce the need for costly social services.
Because they make life-long contributions to the lives of their brothers and sisters who have disabilities, siblings of all ages benefit from simple, but critical considerations.
Siblings need information about:
- Their sibling’s disability and its implications
- Treatments and services for their brothers and sisters
- Plans their parents have for their sibling’s future
- The genetic implications of their sibling’s disability
- How to effectively advocate for their brother or sister
- Services for adults with disabilities
Siblings need opportunities to:
- Meet their peers
- Discuss common joys and concerns with other siblings
- Learn how other siblings address problematic situations frequently faced by brothers and sisters
- Discuss their current and future roles in the life of their sibling who has a disability.
Siblings need parents who:
- Understand siblings’ life-long and ever-changing concerns
- Learn proven strategies to minimize siblings’ concerns and maximize their opportunities
- Provide their typically developing children with information and opportunities to meet their peers
- Plan for the future of their child with an intellectual disability, and involve their typically-developing children in this planning
- Value the right to self determination for each of their children
Siblings need service providers who:
- Understand siblings’ life-long and ever-changing concerns
- Proactively provide brothers and sisters with information
- Create programs specifically for siblings
- Make systemic changes to include brothers and sisters in their working definition of “family.”
Key Services and Supports Recommendations
To help their brothers and sisters who have disabilities lead dignified lives, siblings will benefit from funding effective programs, services, and considerations, including:
- A national clearinghouse for sibling-related resources, which would make the following available online:
- A national directory of Sibshops and adult sibling programs;
- Information regarding local and national sibling-related events;
- A source for a wide range of sibling-related materials: recommendations for parents, service providers, and siblings of all ages; fact sheets about disabilities and services for siblings of all ages; sibling-related books, curricula, etc.;
- A single comprehensive source for listservs and social networking websites for young, teen, and adult sibs as well as listservs for those running programs for siblings and for parents concerned about their typically-developing children; and
- A hotline for siblings, parents, and family members who do not have access to the Internet or wish to discuss concerns about their families.
- Training for agency staff who wish to create programs for brothers and sisters of all ages and technical assistance to agencies who wish to make changes to include brothers and sisters in their working definition of “family.”
- Presentations at national, state, and local conferences for parents and service providers on how to proactively address sibling concerns.
- Creating and promoting innovative curricula to meet the support and information needs of preschool, school-age, teen, and adult siblings.
- An annual national conference for adult siblings, featuring workshops on topics identified by clearinghouse surveys and adult sibling listservs.
“In the United States, there are millions of brothers and sisters of people with disabilities. We will likely become caregivers for our siblings when our parents die. Anyone who is interested in the welfare of persons with disabilities ought to be interested in us.” –Kitty Porterfield, sister, Alexandria, Virginia
Seltzer, M.M., & Krauss, M.W. (1995). Older families with adult children who have disabilities: What are their service needs? Intraactions, Waisman Center, University of Wisconsin, February http://www.waisman.wisc.edu/ia0295.html
Johnson, A. B., & Sandall, S. (2005). Sibshops: A Follow-Up of Participants of a Sibling Support Program. University of Washington, Seattle