Transcript A Sibling’s Voice:

The needs of Siblings of Individuals with
Intellectual and Developmental Disabilities.
Dr. Meg DePasquale, LCSW-C
Sibling Relationship
 The 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 Toddlerhood
 School-aged
 Adolescence
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 Relationship
 Siblings 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 Theory
 The 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 Theory
 Rather 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 Guilt
 They 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 Obligation
 There 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 Loneliness
 The 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 Embarrassment
 All 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
Needs
 Understanding 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 Groups
Decrease the negative
effects
Enhance the positive
effects
 Isolation
 Social competency
 Embarrassment
 Insight
 Overachievement
 Appreciation
 Anger
 Compassion
 Resentment
 Pride
 Neglect
 Maturity
 Guilt
 Increased care taking
Transitional concerns
 For 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 concerns
 As 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 ideas
 Educating 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.