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Lead: The challenges of caring for siblings with disabilities.
Brief Synopsis
Elizabeth Ellis has built her professional life helping families to prepare for the day when parents are no longer able to care for their disabled children; now she anticipates taking on responsibility for her own 37 year-old brother Danny, who has a developmental disabilities. Danny works as a laborer and presently lives at home with his parents.
Ellis seeks balance as she takes on an increasing role in Danny's life. Her affection for her brother is apparent, as is her pride in his accomplishments (such as graduating from high school and competing in the Special Olympics). At the same time, she feels the weight of responsibility: "One of the biggest things I am concerned about is what is going to happen to him when my parents are no longer able to care for him, and ultimately that burden will fall on me."
Questions arise in regard to respecting her parents' wishes for Danny, working with her two other brothers, meshing her own family life with Danny's care. There are also the more practical issues of everyday life: Where should he live? How much guidance is enough? How much independence is the right amount? Should I become his guardian? How do we pay for his needs?
Along with the prospect of caring for aging parents, baby boomers like Ellis are encountering the fact that their parents will one day no longer be there to provide homes and support for their children with disabilities. Research indicates that siblings are an integral part of the lives of disabled adults, a fact sometimes overlooked by service providers; in addition, they will ultimately carry the full responsibility of care. Siblings can benefit from support and information about the disability. (Krauss)
For Elizabeth Ellis, one source of support has been getting to know others in a similar situation. Arc Massachusetts (formerly know as the Association for Retarded Citizens of Massachusetts) offers support groups and educational programs for adult siblings. With the proper support, having a sibling with a disability can be a positive experience. As Elizabeth Ellis reflects, "it has really changed my life, it has shaped me as a person, having a brother with special needs."
Organization
Arc Massachusetts for Children, Adults, and Families.
217 South Street
Waltham, MA 02254
(781) 891-6270
http://www.gisnet/~arcmass.org
arcmass@gis.net
- Arc Mass was formerly know as the Association for Retarded Citizens of Massachusetts.
- Statewide volunteer educational organization dedicated to helping individuals with mental retardation.
- Goal is to promote the general welfare of all persons with mental retardation.
- Maintains a local network of parents, professionals, and friends joined together to advocate for better programs and supports for these individuals and their families.
- Arc Mass represents the largest network of parents of children with mental retardation, and led the battle to implement passage of Chapter 766, which assures free and appropriate public education to all.
Elizabeth Ellis
Contact through Nancy Martland, CFN Program Director.
(617) 627-5314
nmartlan@emerald.tufts.edu
Kim Molle
Arc Massachusetts
217 South Street
Waltham, MA 02254
(781) 891-6270.
http://www.gisnet/~arcmass.org
arcmass@gis.net
Donna Rubenoff
Family Support Coordinator
Arc Massachusetts
217 South Street
Waltham, MA 02254
(781) 891-6270.
http://www.gisnet/~arcmass.org
arcmass@gis.net
Expert Contact
Professor Marty W. Krauss
Starr Center on Mental Retardation
Brandeis University
P.O. Box 9110
Waltham, MA 02254
(781) 736-3832
Dr. Carol Singer
(617) 244-7835
Dr. Singer is a licensed psychologist specializing in work with families of people with disabilities.
Background
People who have siblings with a disability have reported having the following concerns:
- Guilt about not having a disability. Guilt about not having a disability, while the brother or sister does have one. Some siblings may even feel they are to blame for their brother's or sister's disability.
- Embarrassment of the sibling's behavior or appearance. The sibling who does not have a disability may avoid contact with the brother or sister, not invite friends to the home, etc.
- Fear that they might develop the disability. Children (and sometimes even adults) think that disabilities such as mental retardation are contagious.
- Anger or jealousy over the amount of attention the brother or sister with a disability receives, especially if the child's disability requires additional care.
- Isolation or feeling like no one else has the same feelings or experiences about having a sibling with a disability.
- Pressure to achieve in order to "make up for" a brother or sister's inabilities. The sibling who does not have a disability may feel that excelling in school, sports or other ways will compensate for the fact that a brother or sister with a disability is not able to do as well.
- Caregiving, especially if it conflicts with plans with friends or the responsibility becomes overly burdensome.
- Information needed about a brother or sister's disability. Siblings often are not given thorough information about why a sibling has a disability, how it affects him or her and what the family can do to help this family member.
Research on siblings indicates that there are positive aspects in being the sibling of a brother or sister with a disability. Researchers have found that children in families where a sibling has a disability can become more mature, responsible, self-confident, independent and patient. These siblings can also become more altruistic (charitable), more sensitive to humanitarian efforts and have a greater sense of closeness to family (Lobato, D.J. (1990). Brothers, sisters, and special needs: Information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore: Paul H. Brookes Publishing Co., Inc./Powell, T.H. & Gallagher, P.A. (1993). Brothers and sisters: A special part of exceptional families. Baltimore: Paul H. Brookes Publishing Co., Inc.)
Growing up with a sibling who has a disability may instill a greater level of understanding and development in the siblings who are not disabled. They may develop greater leadership skills, especially in areas where understanding and sensitivity to human awareness issues are important. Many leaders in The Arc and other contributors to the field of mental retardation, as well as other notable people, grew up in families with a brother or sister with a disability. (The Arc. National Headquarters . P.O. Box 1047. Arlington, Texas 76004. (817)261-6003; (817)277-0553 TDD)
References
The Arc. National Headquarters . P.O. Box 1047. Arlington, Texas 76004. (817) 261-6003; (817) 277-0553 TDD
Lobato, D.J. (1990). Brothers, sisters, and special needs: Information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore: Paul H. Brookes Publishing Co., Inc.
Powell, T.H. & Gallagher, P.A. (1993). Brothers and sisters: A special part of exceptional families. Baltimore: Paul H. Brookes Publishing Co., Inc.
Seltzer, M.M., Greenberg, J.S., Krauss, M.W., Gordon, R.M. & Judge, K. (1997) Family Relations: Interdisciplinary Journal of Applied Family Studies, 46 395-405 (paper, available through Professor Krauss)
Stoneman, Zolinda, Berman, Phyllis W., Editors. The effects of mental retardation, disability and illness on sibling relationships: Research issues and challenges. Baltimore: Paul H. Brookes Publishing Co., Inc.
Valdivieso, C., Ripley, S., & Ambler L., NICHCY News Digest. "Children with Disabilities: Understanding Sibling Issues." Number 11, 1988. Washington, D.C.: Interstate Research Associates.
Compiled by:
Pek-san Liu and Nancy Martland
Web Development Team
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