Background: Siblings of Children with
Special Health and Developmental Needs

While the parents of the child with special health and developmental needs have been the first to benefit from this heightened awareness, agencies are now beginning to understand that brothers and sisters of children with special needs have concerns that in many ways parallel their parents' experience. But compared with their parents, these brothers and sisters enjoy far fewer programs, services and considerations--even though the sibling relationship is frequently the longest lasting relationship in the family.

In the last several years, however, this has been changing. Research has documented the concerns of siblings of children with special health and developmental needs as programs designed specifically for these siblings have been developed. The following information provides an overview of some of the special concerns of brothers and sisters, one model approach to address these concerns, and a number of considerations for respite care agencies.

Although they frequently have a life-long need for information about the disability or illness and its implications, siblings have far fewer opportunities for obtaining information than their parents do. Written information about disabilities or chronic illnesses is not often developed for young readers. Should brothers or sisters accompany their parents to a clinic visit or an IEP (Individualized Education Program) or an IFSP (Individualized Family Services Plan) meeting, their questions, thoughts or opinions are rarely solicited. Although both brothers and sisters help care for children with developmental disabilities, studies show that older sisters especially have increased caregiving demands. Research suggests that these sisters participate less in their own activities outside the home and have more conflict with the child who has the disability.

Other concerns siblings may have include over identification (fearing that they also have the siblings' condition); a perceived pressure to achieve in academics, or sports; feelings of guilt about having caused the illness or disability or of being spared the condition; feelings of resentment when the child with special needs becomes the focus of the family's attention or is permitted to engage in behavior unacceptable for other family members; and concerns about their and their sibling's future.

Increasingly, the opportunities many siblings experience by growing up with a brother or sister with special needs are also being acknowledged. These include insight on the human condition; maturity from successfully coping with a siblings' special needs; pride in their siblings' abilities; loyalty toward their siblings and families; and appreciation for their own good health and families.

To meet other siblings in a relaxed, recreational setting. The chance to meet peers in a casual atmosphere has several benefits. First, it can help reduce a sibling's sense of isolation. Participants quickly learn that there are others who share the special joys and challenges that they experience. Second, the casual atmosphere and recreational activities promote informal sharing and friendships among participants. Third, the recreational setting helps make the experience rewarding to attend. If a brother or sister regards any service aimed at siblings as yet another time demand associated with the child with special needs, he or she may find it hard to be receptive to the information presented. Sibling events should offer activities that are personally satisfying for the participant, so that he or she is likely to attend in the future.

To discuss the joys and concerns common to brothers and sisters of children with special needs. Siblings need opportunities, such as sibling support groups, to network. Through these discussions, siblings may realize they have many common concerns and experiences. These support systems can help decrease feelings of isolation and provide an opportunity for ongoing support. Serve refreshments and incorportate fun activities along with more serious discussions.

Are siblings included in the definition of "family?" Many educational and health care agencies have begun to embrace an expansive definition of families (e.g., IFSPs, family-centered care). However, providers may still need to be reminded that there is more to a family than the child with special needs and his or her parents. Organizations that use the word "parent" when "family" or "family member" is more appropriate send a message to brothers and sisters, grandparents and other family members that the organization is not for them. With siblings and primary-caregiver grandparents assuming increasingly active roles in the lives of people with disabilities and health impairments, we cannot afford to exclude anyone.

Does the agency reach out to brothers and sisters? Parents and agency personnel should consider inviting (but not requiring) brothers and sisters to attend informational, IEP, IFSP, and transition planning meetings and clinic visits. Siblings frequently have legitimate questions that can be answered by service providers. Brothers and sister also have informed opinions and perspectives and can make significant contributions to the child's team.

Source: ARCH National Resource Center

Curricula for starting Siblings of Children with Special Health and Developmental Needs Programs