Children With Disabilities: Understanding Sibling Issues

Planning For The Future: Sibling Concerns

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for Children and Youth with Disabilities

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Planning for the future raises many important issues for the family of a child with a disability. Powell and Ogle (1985) note that the most challenging of these dilemmas is the care of the adult sibling who has a disability. Even though nondisabled adult siblings have lives (and often families) of their own, they face unusual, additional responsibilities because of their unique relationship with their brother or sister with a disability.

The amount of responsibility that adult nondisabled siblings assume for their adult sibling with a disability varies with individuals and with circumstances. It is dictated by a consideration of family and job responsibilities, personal choice, and available community support.

Perhaps the most challenging issue families face is, on the one hand, encouraging and fostering the independence and self-determination of the person with a disability and, on the other hand, facing the reality that, at some level, assistance may be necessary.

Planning for the Future: An Adult Siblings's Suggestions

The following article is written by an adult sibling who has a close relationship with her sister who has a disability. In the article she shares some ideas on how to encourage nondisabled siblings to take responsibility for adult siblings with a disability. She also shares some of her frustrations and anger over the lack of available community services and housing for adults who have disabilities.

When I was about eleven, my older brother and I developed a scheme to dupe my mom. One of us would find an excuse to keep her out of the house as long as possible while the other would "teach" our little sister how to climb the stairs. Karen has severe disabilities and Mom was afraid she would really hurt herself falling down the stairs. My brother and I were typical kids, we didn't think about the risks, just that all kids need to get around by themselves and Karen should learn to climb stairs. I can't recall how many times Karen tried and tried (and fortunately I've just about forgotten how many times she bounced off the bottom step), but I remember vividly the day my brother brought Mom to the stairs and said, "Look what Karen can do!" That was a red letter day for all members of our family.

Families are expected to care for an infant or young child who is very dependent, and to provide experiences that eventually will lead to the independence of that person. Karen tells me that she needs to be independent through her actions. I've seen her work at a task over and over again until she succeeds, despite the bumps she gets along the way. Karen is so proud of her every accomplishment. She wants others to be proud of them, too.

It is essential to avoid seeing the person with a disability as "the dependent." The sibling with a disability should be empowered through early training and attitudes to act as independently as possible, and to make his or her own choices; as with all of us, some choices will be mistakes. It is equally important to avoid making the sibling without disabilities adopt a parental attitude of responsibility toward the sibling with disabilities.

In looking back over my childhood, I am grateful to my mom for encouraging my independence and for being moderate in her expectations that I care for my sister. Yet, family members are often interdependent throughout their lives. The concept of interdependence is important when considering the relationships of siblings when one has a disability.

I want to be involved in making crucial family decisions. If a family member has a disability, it is important to involve that person, as all others, in any decision-making.

In my experience, and from discussions with other siblings of people with disabilities, I have learned that the best way to foster a positive relationship among family members and a strong commitment to each other is to let them choose the levels and intensity of involvement with each other. I have noted that for me, these levels have fluctuated over time and during various circumstances. My relationship with Karen was strengthened when I came to view my involvement with her as a collaboration. Collaboration can be encouraged, but never coerced.

When I was young I used to get pretty good grades, but I went through a very painful period wondering when my grades would change and I would "grow retarded" like my sister. I never talked with anyone about those fears. Initially, I was afraid to talk about this because I dreaded the answer. Later, when I understood what retardation was, I felt guilty that I had such thoughts. As I grew older, one of my most pressing concerns was what would happen to Karen as she became an adult. I was concerned about my family's ability to provide adequate care for her and where she would live and work as an adult.

I know it's easier to say that siblings should be involved in planning for the future care of their brother or sister with disabilities than it is to involve them. I also know that the emotional ramifications of this are sometimes subtle and not always easily recognized. With respect to financial planning, moms and dads don't usually sit down with their kids and say, "OK, folks, I want to let you know the details of our finances now and our financial prospects for the future." This topic is difficult for parents and children alike. But you must attend to this in some way if family members are going to be prepared to take over the care of, or responsibility for, a person with disabilities. I remember all too well the day I finally got the courage to ask my mom about her insurance provisions for my sister. Her answers were anticlimactic compared to the effort and energy I had spent getting the courage to ask the question.

The difficulty with planning for the future is that it forces family members to deal with the inevitability of death. Sitting down and actually discussing these details can be very disturbing to everyone concerned. My mom says she's going to live forever; that she has too many responsibilities to ever abandon them. While we both know this isn't so, no matter how much we wish it were, it's hard to discuss the inevitable. As an adult, I now know how difficult it is to come face to face with one's own mortality.

I strongly recommend that siblings without disabilities, as well as persons with disabilities, be involved in planning for the future as soon as they are old enough to understand the issues. Thus these financial and future planning discussions will most likely begin during early adolescence. The teenage years are a terrible time to have to cope with mortality. However, I can promise you that sitting down and getting these issues out into the open will be much easier in the long run for everyone.

I've had many sleepless nights, starting when I was a teenager, working through these problems by myself, afraid and overwhelmed, before my family started discussing the issues more openly with me.

When people ask me what my needs are as a sibling of a person with severe disabilities, I tell them that I need the commitment from society that every person has a right to a basic quality of life. I believe that my sister has a right to live and work in her community, and a right to lead a life of her own, with some assistance. For me to be powerful in my collaboration with Karen in meeting these goals, I need resources to make this commitment become a reality.

I'd like to have my sister live up the street, in a house with other people with disabilities with whom she can share responsibilities and experiences. If she lived up the street, she could come over for dinner, my future children could go to their aunt's house to visit her, and she could plant and tend her own garden, something she loves to do.

When I moved to my new neighborhood, I did as I always do, called about community living and work options for my sister. I was told that the current waiting list for group homes was ten years long! I asked the social services worker what I would do if tomorrow my sister needed a place to live. The worker told me that in certain emergencies people could be moved to the top of the list, and then they had to wait only three years! When I asked what one would do in the meantime, the social services worker retorted, "I guess you'd have to quit work and stay with her."

Until society can be mobilized to provide a continuum of services throughout life to citizens with disabilities -- services that allow a person to live a quality life with some independence, no matter what the level of disability -- there will continue to be tremendous stresses on family members. Families should not be expected to bear the total burden; they cannot.

Today, due to pressures from parents and professionals, we have laws guaranteeing a free, appropriate, public education to our nation's children and youth with disabilities. But after the child has aged out of public school, he or she again becomes the responsibility of the family. A continuum of accessible and appropriate services should be available to people with disabilities from birth to death. Just as people united for the passage of special education laws and programs for the school-aged child, we must unite to work for the adequate provision of community-based services and housing for adults with disabilities. Society must share more of the responsibility with the family for providing necessary services. I maintain a positive attitude and believe that this will happen, in time. I just want to make sure that it happens in time for Karen and me.