Policy statements acknowledging the roles played by brothers and sisters can be an important first step in changing agencies’ behavior toward siblings. The following is a statement that we have freely adapted, with permission, from the Illinois Planning Council on Developmental Disabilities, who adopted their policy on siblings in 1991. Feel free to adapt it further to meet the needs of your agency or planning committee.

Most people with developmental disabilities live with their families, or within the support network of family members throughout their lifetimes. Sibling relationships are particularly important because they are among the most enduring and meaningful ones individuals may have during their lives. Having a brother or sister with a developmental disability can have a profound impact on one's caregiving responsibilities, social relationships, and well-being. Many siblings view their relationship with their brothers and sisters positively, taking pride in their siblings' abilities and accomplishments and valuing the lessons they have learned about the human condition from their brothers and sisters and parents.

However, even these brothers and sisters may experience unusual concerns throughout their lives. Siblings may experience unequal parental attention, adverse community reactions to their siblings' disabilities, and caregiving demands that begin at an early age and continue to increase throughout their lives. In addition to a traditional sibling role, adult brothers and sisters of people with disabilities may assume other roles as well, such as advocate, housemate, companion, or guardian. As adults, their caregiving responsibilities may range from assisting parents to assuming full responsibility when parents are no longer able.

[This agency/planning council] believes it is important to recognize the role of siblings in efforts to support individuals with developmental disabilities and the family. [The agency/planning council] encourages inviting brothers and sisters to IEP and transition-planning meetings, staffings, and training events, and encouraging involvement in family support initiatives when age-appropriate and when desired by the individual with developmental disabilities.

Any considerations regarding siblings must allow for a range of individual differences in levels and intensity of involvement with the sibling with the disability. These differences will reflect in cultural and familial values and personal resources. Supports and considerations for brothers and sisters should seek to strengthen relationships between siblings, while honoring their individuality.

As parents age, the responsibility for support to the person with developmental disabilities often shifts to the siblings. A brother's or sister's willingness and capacity to assume additional responsibilities must be considered and supported by family members and service providers. When siblings do choose to accept responsibilities, it is critical that they be provided with information and guidance to participate with their brothers and sisters in decision making and long-range planning. Because many brothers and sisters who assume caregiving and guardian roles as adults are unaware of the often confusing array of programs and services available for adults with disabilities, agencies and organizations should reach out to this population in a proactive manner.

[The agency/planning council] recognizes that sibling issues are life-span issues. Like older brothers and sisters, younger siblings will need accurate, up-to-date information about their siblings with disabilities. Like their parents, many siblings—school age and adult—value sharing their common experiences, joys, and concerns with peers. Because their relationship with the person with special needs will most likely be the longest lasting in the family, siblings deserve peer support opportunities throughout their lives.

Adult siblings of people with disabilities continue to be an extraordinarily overlooked population. They are frequently torn between the responsibilities they have for their own families and their allegiance to their sibling with a disability, especially as parents age and pass away.

The roles that siblings play in their brothers' and sisters' health, happiness, and community life are vital. Agencies, including schools, social service agencies, and health care providers, should be encouraged to reach out to siblings of all ages to provide them with the support and information necessary to ensure the well-being of all involved.

From SIBSHOPS: WORKSHOPS FOR SIBLINGS OF CHILDREN WITH SPECIAL NEEDS (Donald J. Meyer & Patricia F. Vadasy, 1994, Baltimore: Paul H. Brookes Publishing Company).

Should you be interested, the following is the original text of the policy statement from the Illinois Planning Council on Developmental Disabilities

Most people with developmental disabilities live with their families, or within the support network of family members throughout their lifetime. Sibling relationships are particularly important as they are among the most enduring and meaningful ones individuals may have during their lives. Having a sibling with a developmental disability can have a profound impact on one's caregiving responsibilities, social relationships and well-being. The research shows most siblings view their relationship with their brother or sister as positive and as an enhancement to their family. However, at times siblings experience stress related to increased caregiving responsibilities, unbalanced parental attention, and adverse community reactions.

Siblings often assist the family member with developmental disabilities in numerous ways. Depending on the sibling's age, this may involve different levels of caregiving responsibilities ranging from assisting parents to assuming full responsibility when parents are no longer able. The roles of adult siblings could include that of advocate, friend, and/or guardian.

The Illinois Planning Council on Developmental Disabilities (IPCDD) believes it is important to recognize the role of siblings in efforts to support individuals with developmental disabilities and the family. IPCDD encourages the involvement of siblings in the family support initiatives, in staffings, and in training events, when age appropriate and when desired by the individual with developmental disabilities and the family.

Support to siblings must recognize individual differences in levels and intensity of involvement with their brother or sister, in cultural and familial values, and in personal resources. This support should strengthen the relationship between siblings, while enhancing their well-being.

As parents age, the balance of responsibility for support to the person with developmental disabilities often shifts to the sibling(s). Their willingness and capacity to expand their roles must be considered and supported by family members and service providers. It is critical that siblings are provided the knowledge, information, and guidance needed to participate with their siblings in decision making and long-range planning. The needs of the person with disabilities remain paramount.

Young brothers and sisters of persons with disabilities need to be provided with accurate up-to-date information appropriate to their age to answer the questions they have about their siblings with disabilities. IPCDD recognizes that siblings and families may encounter negative or adverse reactions in their local communities. Siblings, in particular, at various developmental stages often receive strong peer pressure to conform by renouncing their family experiences which differ from their peers. Children who have a sibling with disabilities also need the opportunity to talk to others who share similar experiences and concerns.

Adults who are siblings of persons with disabilities face a number of unique concerns and challenges. On the one hand, they have lives of their own, often with responsibilities to spouses and/or their own children. On the other hand, they have a bond with their sibling with its own set of potential responsibilities as parents age and pass away.

Adult siblings of people with disabilities continue to be an extraordinarily overlooked population. Agencies, including schools, community agencies, and health care providers, should reach out to siblings and other family members to provide them with the support and information that will address their concerns and help them to make appropriate decisions. Service providers should recognize and keep interested siblings involved, especially in the cases of death and emergency. In fact, adult siblings who become primary caregivers should receive the same supports with the consent of their sibling with a developmental disability to participate in appropriate meetings or activities, and by requesting and respecting their input. (Reprinted with permission)