A Sibling’s Voice:The needs of Siblings of Individuals with

Intellectual and Developmental Disabilities.

Dr. Meg DePasquale, LCSW-C

Sibling RelationshipThe sibling relationship constitutes

the longest lasting family tie, beginning with the birth of the younger siblings and ending with the death of one member of the sibling pair. Infancy and ToddlerhoodSchool-agedAdolescence

Sibling Relationship Tucker, McHale and Crouter (2001) examined the extent and

nature of the support that siblings provide for each other during the adolescent years. Compared the support that was provided in four domains

Results indicated: Siblings take on mutually supportive roles regarding

family issues Extent of sibling interactions and support provided for

each other influenced social skills and the development of self-concept.

Sibling RelationshipSiblings share a common family heritage,

both genetically and experientially.For this reason, the sibling relationship is

normatively characterized as egalitarian, reciprocal, and mutual (Seltzer, Greenberg, Orsmond, & Lounds, 2005).

How, then, is the sibling relationship distinct when one member of the sibling pair has an intellectual and developmental disability?

Definition of Terms

Intellectual and Developmental disabilities  The American Association on Intellectual and

Development Disabilities (AAIDD) describes an intellectual and developmental disability as: a significant limitation both in intellectual functioning and

in adaptive behavior as expressed in conceptual, social, and practical adaptive skills, originating before the age of 18

Intellectual and Developmental Disabilities (IDD)

According to the U. S. Developmental Disabilities Assistance and Bill of Rights Act, the term developmental disabilities means a severe, chronic disability that (a) originated at birth or during childhood,

(b) is expected to continue indefinitely, and

(c) substantially restricts the individual’s functioning in several major life activities (Developmental Disabilities Assistance and Bill of Rights Act, Public Law No. 106-402, 114 Stat. 1683).

Intellectual and Developmental Disabilities (IDD)

The Center for Disease Control (2012) identifies the following conditions as developmental disabilities: ADHD Intellectual Disabilities

Autism Learning Disorders

Blindness Seizures

Cerebral Palsy Stuttering or Stammering

Moderate to profound hearing loss

Other developmental delays

Sibling Relationship with an Intellectually and Developmentally Disabled Individual

Growing up with a disabled sibling in the household adds a new dimension to the childhood experience: psychosocial concerns, care-giving responsibilities, heightened apprehension about the future

health and well-being of the sibling (Altman & D’Ottavi, 2005).

Non-Disabled Siblings may experience:Embarrassment over their sibling’s behavior,

- Guilt and resentment,

- Isolation and loneliness,

- Increased responsibilities around the house, - Increased pressure to achieve

(Barak-Levy, Goldstein & Weinstock, 2010; Conger, Stocker & McGuire, 2009; Conway & Meyer, 2008; Dodd, 2004; Lock & Finstein, 2009; Meyer & Vadasy, 1994; Opperman & Alant, 2003; Stoneman, 2005).

Historically it was hypothesized that the presence of a child with a disability was a source of developmental risk for other children in the family. The outcome of this early research was negative in its summation.

This early work has drawn a variety of criticism. These pioneer studies may reflect an antiquated

understanding of the meaning of disability and its impact on the family (Lamorey, 1999).

There were few services or supports available to children with disabilities or their families, and there was a powerful stigma attached to the presence of disability in an individual or family

Recent research has looked at the positive and negative effects that having a disabled sibling has on the non-disabled sibling.

Research involving the impact of children with intellectual and developmental disabilities on family members has focused mainly on parental relationships, and the impact on siblings has often been overlooked (Kaminsky & Dewey, 1999; Lindsey & Stewart, 1989; Macks & Reeve, 2006; Stoneman, 2005).

Stoneman (2005) indicated that much of the research is based on the premise that having a sibling with a disability produces a negative effect such as guilt, depression, and resentment between the non-disabled sibling and his or her disabled sibling.

Need for Support • Relatively little attention has been directed towards the

support needs of siblings of children with disabilities (Lock & Finstein, 2009).

• When the topic of support resources is discussed, the perspective of the non-disabled sibling is often missing or the parent perspective is often incorporated, which, is not always the same as siblings' self-reporting.

• However, Petalas et al. (2009) indicated within their study that siblings commented on how formal support networks could be beneficial if they were available, such as respite services or a support group.

Need for Support Research suggests that support groups for siblings of

children with intellectual and developmental disabilities such as within the autism spectrum may provide encouragement for these individuals (Dodd, 2004; Lock & Finstein, 2009; Naylor & Prescott, 2004; Petalas et al., 2004; Strohm, 2001).

A support group model designed for use with siblings of children with intellectual and developmental disabilities seems to be a vital missing component in the treatment of children and families affected by these disabilities (Abrams,

2009; Dodd, 2004; Lock & Finstein, 2009; McCullough & Simon, 2011).

Need for Support • The lack of awareness amongst the professional community

regarding the needs of non-disabled siblings can be seen through the limited treatment modalities specific to siblings of individuals with intellectual and developmental disabilities. Siblings of disabled individuals are in need of treatment as well as their affected sibling.

By increasing the knowledge base in this area, other agencies that work with individuals with intellectual and developmental disabilities and their families will benefit from research that is based on the thoughts and opinions of individuals who deal with these disorders daily and how they handle it.

Family System TheoryThe sibling relationship is socialized in the context of the family. A family is

considered one emotional and functional unit whereby individuals cannot be understood in isolation from one another, but rather a part of their family, one that is interconnected and interdependent (Bronfenbrenner, 1979).

 Working within a family systems framework allows recognition of the transactional process that operates within the family. All family members influence each other individually and holistically (Minuchin, 1985).

Every family member is part of a complex system, in which the behavior of one individual or subsystem inevitably has an effect on the other members and subsystems (Minuchin & Nichols, 1993). 

A child with an intellectual and developmental disability creates change, change which affects all members of the family system, which in turn affects all other systems.

Family System TheoryRather than thinking of an intellectual and developmental

disability as existing only in the individual, it is important to take this broader view.

Researchers of families of children with disabilities have been working within a family systems paradigm for some time, recognizing the fact that the child affects the family and the family affects the child in a dynamic interchange over time (Hauser-Cram, Warfield, Shonkoff & Krauss, 2001; Shonkoff, Hauser-Cram, Krauss & Upshur, 1992).

The sibling relationship in these families have rarely been considered, despite the recognition of that the siblings perspective is uniquely important.

Feelings of Guilt Guilt was also felt by the participants when they would become

embarrassed or frustrated by their sibling behaving in a socially inappropriate way, especially when in public. Guilt is probably the overwhelming feeling. I would get mad at him because

he would be doing something irritating or embarrassing. And then I get…l even more guilty about it, being mad at him, his behavior, my reaction to it—the whole situation……Annie, age 35

There are feelings of guilt and shame about not being able to handle or express their feelings regarding their siblings because the situation was too overwhelming. There were times when I would lie and say I was an only child. Like if I was

in a different environment and different people in it and they were talking about kids…like the first day of school. That was the most horrible experience. Tell us about your family….especially when you take a foreign language like Spanish. Do you know how to say you have two brothers with mental retardation in Spanish? I don’t know those words. I didn’t even know them in English, so I would just say that I was an only child. That just simplified it. I felt really guilty about that, but it was so easy…Ronald, 50

Feelings of GuiltThey also articulated that a feeling of “survivor’s guilt” would

permeate their thoughts at times, especially when they were approaching a life transition such as graduating, getting a job, moving out or getting married. I think every sibling no matter what, disabled or otherwise affects you,

‘cause you have a relationship with that person. I think that with having siblings with disabilities affects you too. There are all kinds of emotions that go with it. In my case, because there are three of us and two had disabilities, it’s like the solider that didn’t get shot. Why me? Why did I get saved? You think about that as a kid. You think about that as an adult. …..Roger, age 50

Now I sometimes feel guilty that I can do this, this, and this and he can’t. I can get up and go whenever I want to. I don’t have anyone telling me what to do. I can hop in my car and drive and those things, and he is stuck at home. He doesn’t drive and things like that. I do feel guilty about that, and we should probably go over there and spend more time with him and take him here or there….Barbara age 23

Feelings of Obligation Feeling responsible for meeting the current and future needs of their

siblings, in addition to the obligation to advocate for their sibling, was another identified theme. Since I was very young I have been the second parent, pretty much. I have

been to every doctor’s appointment, every surgery. I know every doctor by name and they know me. I know exactly which lawyers handle “Reggie’s” trust fund, and I am in the will and I have been in the will since I was 12. When they wrote the will, “Reggie” was not to go anywhere if I wasn’t there. Now that we are adults, the will has changed and even when I was in college at 18, the will stated that I would be “Reggie’s” primary caregiver. I always have been….Susan, age 24

“Annette” was already caring for her sibling and had been for quite some time. She implied that it was the natural course of events. Eventually as my parents aged, my father passed away so I moved my mother

and sister in with us. I was married at that time so we put an addition on the house. Finally convinced her to move from the house she had been in for forty-some years into a one-level apartment that was plenty adequate for them, and that was in 1990. And when my mother passed away, I just kept my sister with us. …Annette , age 67

Feelings of ObligationThere was also much discussion surrounding future care for their

sibling.Annie” who is 35-years old, stated how she moved from New

Jersey to Maryland so that she would be geographically closer to her brother. She could then become more actively involved in the day-to-day decision-making even though she knows her mom is still her brother’s legal guardian.You know I don’t remember having a conversation when I was

younger since I always thought since it was just the two of us. So I moved down from NJ after college to be here, and I think we only had a formal conversation about it a couple years ago. We talked about it before but never exactly what was going to happen. So I have really started to go to doctor appointments over the past few years. I mean there is so much in my mom’s head—the medications he has been on—that I need to be aware of, so when the time comes I can advocate for what my brother needs…Annie, age 35

Feelings of LonelinessThe overarching domain of loneliness emerged as a

theme, as participants expressed feeling as if no one knew what it was like to have a sibling with an intellectual and developmental disability. But I always have this feeling, this memory that there is really

nothing like that connection with someone else who’s got a special needs brother or sister. I didn’t feel that at all….I never had a friend that I can recall who had a similar situation to mine….Ronald, age 50

I would have also had a very hard time. My best friend, her brother had cerebral palsy, so even though we both had a sibling with special needs, we had very different experiences growing up because of their diagnoses. I felt guilty like her life was almost worse, so I would feel guilty talking to her about my brother…Susan, age 24

Feelings of Loneliness They also discussed the lack of access or availability to formalized

supports. I didn’t really feel like I had someone I was going to confide in. I didn’t know

enough to know that it was even important to even express that, so I thought it was a part of life and you gotta roll on…. As you get older, you get a little more self-awareness, and I missed that part because I didn’t have the notion that it was important to do that. I didn’t therefore seek anybody out and had I had the notion to do that, who would I have sought out? I don’t really know. No one comes to mind.

In “Annette’s” case, growing up in the 1950s, no special school for her sister to go to even existed. It had been recommended to “Annette’s” parents that her sister be placed in an institution and not live at home. Growing up with my sister, we didn’t have all these federally mandated

programs like IDEA and ADA. How you were brought up was, this is the way it is. Unless you are so significantly impaired that we are going to put you in an institution, you’re brought up at home and you are raised at home, and your family takes care of you, and you make sacrifices and you do what you have to do….Annette, age 67.

Feelings of EmbarrassmentAll the participants identified feelings of embarrassment once they

began pre-adolescence and adolescence. The disabled sibling’s maladaptive behaviors often become more

of a worry to the non-disabled sibling.

I remember one time bringing him to his swim lessons at the Y and him laying on the floor in the atrium, which had super high ceilings and him having this tantrum and me being like, I can’t, I can’t deal with this…Annie, age 30

I definitely had embarrassment issues about how she would behave when we were out. I was always worried about that, going out in DC or something like that, where she would get looks…..Jeff, age 43

You always get that weird look from your friends, like, ‘Is your brother ok? Are you going to let him do that? Is no one going to say anything about that? Do you think that is ok? Are you sure I can’t catch it?’…Barbara, age 23

Feelings of Embarrassment Some take on the protector/advocate role as discussed previously, and

others may experience embarrassment or resentment.

The following passages illustrate the vacillation between embarrassment and wanting to protect their siblings Like you feel totally responsible and totally pissed off any time anybody

says anything bad about your sibling, but there are times when you are, like, oh, my gosh! Oh, my gosh! Is he really doing that? I can’t believe that he is doing that, and he totally thinks that’s fine. And so, there is a terrible struggle ‘cause your mom preaches, be nice, be compassionate, be understanding because this is so hard for him, and you know that, but at the same time, you’re like, “Oh, My God!” These are my friends and he is embarrassing me around my friends and I can’t do this!....Susan, age 24

Like when he took the igniter off the grill and shocked people at school. You would be embarrassed and in denial, like, ‘that is not my brother.’ You don’t literally say that, but that is how you feel. But at the same time you are sitting there trying to defend him to the principal….Barbara, age 23

NeedsUnderstanding the needs of siblings of individuals

with intellectual and developmental disabilities is important in planning interventions and support services.

The lack of these supports and ability to connect with other individuals who also have disabled siblings was seen as a cause of negative feelings such as loneliness and embarrassment.

Siblings need the opportunity to share their experiences, worries, and concerns with other individuals in similar circumstances in an understanding and non-threatening environment, such as in a support group setting

Goal of Support GroupsDecrease the negative

effectsEnhance the positive

effects IsolationEmbarrassmentOverachievementAngerResentmentNeglectGuilt Increased care taking

Social competency InsightAppreciationCompassionPrideMaturity

Transitional concernsFor adult siblings of individuals with a

developmental disability, a key issue is planning for the transition when parents can no longer provide care for the person with a disability.

Often, families do not make concrete plans regarding future living arrangements and financial plans .

Although siblings are more likely to be the future caregivers, families often do not involve them in the planning. Many times this is due to the reluctance of the parent to cast the typical sibling in the role of caretaker

Transitional concernsAs parents age and are less able to support

their child with a disability, the involvement of siblings in the lives of their brothers and sisters with disabilities becomes more necessary.

Eventually siblings will be the guardian and potential caregiver for their siblings.

Possible ideasEducating siblings on the ins and outs of

navigating the “adult world” of disabilities How and when to talk with their aging parent

about how the transition will occur and when it should occur.

More psycho-educational groups, Greater use of internet support groups for

long distance siblings, More information on future planning to

effectively transition financial, residential, and leisure responsibilities from parents to sibling caregivers.