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The Longest Relationship: Special Issues and Challenges of Adult Siblings

By: Tzivy Ross Reiter

Published in Building Blocks, June 2011

Family services in the developmental disabilities community generally focus on providing support to parents. Caring for a child with disabilities can be overwhelming. Parents can never receive too much validation, support and concrete assistance in this endeavor. Yet there are others in the family whose lifelong relationship with the child with a disability surpasses even the one he has with his or her parents, yet whose needs are often overlooked: his or her siblings. People with developmental disabilities are, thankfully, living longer than ever, and now have a life expectancy consistent with that of their typically developing peers. It is therefore their adult siblings who are most likely eventually to assume responsibility for their care as they age. The relationship between individuals with disabilities and their adult siblings is too often taken for granted.

Adult siblings are often excluded from the planning process for their sibling’s long term care, and in some cases are not even given the relevant information about their sibling’s diagnosis and treatment. One of the more commonly cited concerns of siblings is their desire to participate, and have input into planning for future living arrangements. In too many cases, future living arrangements are never discussed, and in other instances, plans are not made at all, creating feelings of anxiety and helplessness. Some adults are willing to welcome their sibling with a disability into their home when the time comes; others feel that is not a realistic option. In the ideal scenario, future living arrangements are discussed and mutually agreed upon between the individual with the disability, his or her parents and any siblings in the family. One sibling in her 60’s confided her frustration over her mother’s lack of planning for her sister.

“What can I do? My mother refuses to make any plans for her. She only wants her to live at home with her while she is still able to. But what will happen when my mother gets too sick to care for her? I will be the one who lives with the consequences.”

In situations where future living arrangements have not been discussed, the adult sibling may be placed in the uncomfortable position of having to create an arrangement that their sibling with a disability may not be happy with or prepared for.

“My parents never discussed with my sister the idea of her moving into a residence. We [my siblings and I] think it would give her more independence, and also more social opportunities, but she is scared of the idea because it is unknown to her. I am the bad guy every time I bring it up, and it really bothers me to have been left in that position.”

Even if the sibling with a disability is living independently or in a residential placement, oversight of his or her care is still a big responsibility. Equitable division of oversight responsibility among siblings can be a concern. In some cases, it might be necessary to establish legal guardianship. If there are multiple siblings who are not on the same page on these issues, it can create conflict in the familial relationship. Other issues of concern to siblings include:

-Concern about sibling’s health and well-being
-Assuming burden of cost for the sibling’s care
-Concern about what services are available and how to access those services n Concern about dividing their time and attention toward care of their sibling and their own family i.e.; children and grandchildren
-Unresolved feelings from childhood, including lingering resentment over a parents’ favored treatment of the sibling with a disability

When siblings are thrust into the role of primary caregiver, they will often embrace the role. Many adults have loving and close relationships with their siblings with a disability, and assuming greater responsibility for their care when needed is a natural outgrowth of that attachment. Often people have reported that having a sibling with a disability has been the single most influential factor in their lives. Some of their most significant life choices have been informed and directed by their sibling, such as entering into the helping professions or choosing a marriage partner who is accepting of their sibling. Other siblings will rise to the occasion, but do so with mixed feelings and latent resentment; still others will prefer to have minimal involvement. There are certain variables which seem to predict the level of closeness and involvement that adults will have in the lives of their sibling with a disability as they age. Sisters tend to be more involved than brothers, likely due to traditional expectations placing them into the caregiver role. Geographic proximity is also a factor. However, the quality of the sibling relationship in childhood and adolescence can be the greatest predictor of future involvement into adulthood. Toward this end, one man has devoted his professional career to strengthening the bond between children and adults and their siblings with a disability. Don Meyer is the founder and Director of the Sibling Support Project, an initiative dedicated to the lifelong concerns of brothers and sisters of individuals with a disability. Their programs include workshops, publications, and online support for children and adult siblings. Their internationally recognized “sibshops” are activity- based groups for brothers and sisters of children with disabilities, giving them the opportunity to receive education, validation and obtain peer support in a non-judgmental and recreation based context.* The premise behind much of Mr. Meyer’s work is that the lifelong relationship between an individual with a disability and his or her siblings is vital to the care and well-being of both, and as such, it deserves to be nurtured and supported.

Tzivy Ross Reiter, LCSW-R, has written extensively about issues related to developmental disabilities and mental health. She is a Director at Ohel Bais Ezra. She is also an advisor to Building Blocks Magazine. With over four decades of experience in caring for those across the spectrum of developmental disabilities, OHEL Bais Ezra has elevated and enriched the lives of thousands of individuals and families. OHEL Bais Ezra is able to tailor programs that meet the specific needs of each individual and optimize their potential. For more information, Call 1.800.603.OHEL web: ohelfamily.org Facebook: facebook.com/ohelfamily.

 

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