Transcript Lives in Transition: Young Adult Siblings of Individuals

Adult Siblings of Individuals with Developmental
Disabilities: Factors Affecting Closeness and Future
Caregiving
Ann P. Kaiser & Meghan Burke
Vanderbilt Kennedy Center
Vanderbilt University
Nashville, TN
USA
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Sibling Relationships Are Important
 Longest lasting family tie
 Sharing family heritage,
genetically, experientially
 Ideal sibling relationship:
egalitarian, reciprocal and
mutual
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Summary:
Limitations in Current Research
 Lifespan issues
 Adolescence, early adulthood,
 Middle adulthood
 End of life issue
 Changing contexts of services,
culture, health
 Interventions to support
siblings
 Childhood interactions
 Supports to siblings across the
lifespan
 Critical transitions and decision
making
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Adult Siblings
 As children and as adults, most siblings have been report to be
doing well (Stoneman, 2005; Hodapp & Urbano, 2008)
 Recently, studies of teens and young adults siblings of individuals
with ASD have been reported to have relatively higher levels of
depression and anxiety than other young adult siblings (Orsmond &
Selzer, 2007)
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Research Questions
 What is your current relationship with your sibling with
disabilities?
 According to the sibling without a disability
 According to the sibling with a disability
 What factors may affect sibling relationships?
 What about future caregiving roles?
 According to the sibling without a disability
 According to the sibling with a disability
 What supports or factors are needed for siblings?
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Method I
 Tennessee Survey of Adult Sibling
 179 item survey containing questions about:
 The typical sibling
 Their sibling with disabilities
 Their relationship
 Current responsibilities and future plans
 Needs for support for their sibling with disabilities
 Included the same questions as the National Survey of Adult Siblings with
additional questions about needs of sibling with disabilities
 Responses tabulated by Survey Gold and exported to SPSS for analysis
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Study Method I
 Survey distributed across the state of TN
 Contacted family and adult service providers throughout the state of
TN to distribute notices to families
 Web-based responses
 Individual copies emailed to families
 Paper copies made available upon request
 Vanderbilt Kennedy Center website
 Yield: 190 responses from siblings ages 18-71 yrs
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Study Method II
 Responses to 3 open-ended questions from the survey were coded
for themes
 Used EthnoNotes to code and group individual responses
 Responses were rated on a 5-point Likert Scale developed for each
response theme
 Rating verified by a second coder
o What is your relationship like with your brother or sister now?
o How has your relationship changed in the last 5 years?
o What do you expect your relationship to be like in the next 5 years?
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Participants
Sample Characteristics
(N=190)
Age
37.6 yrs (Range: 18-71; SD=14.2)
Gender
79% Female
Ethnicity
93% White
3% African American
4% Other
Education
41% High School
37% College
22% Master’s or PhD
Marital Status
33% Never married
52% Currently married
10% Divorced/Separated
5% Widowed
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Their Siblings With Disabilities
Entire Sample
Age
35.8 yrs (Range: 8-68)
Gender
55 % Male
Disability*
MR 43%
ASD 13%
DS 22%
Emotion/BD 13%
Residential arrangements
Lives with parents 49%
Lives in sibling’s home 9%
Other residence 42%
Time to travel
<15 min 34.4%
16-60 min 25.6%
1 hour
31.2%
Not reported 8.8%
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* Does not sum to 100%; more than one disability could be specified; many other disabilities included but not specified here.
Some of our sibling pairs
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
24 year old single Male who attends graduate school out of state, training to become an
accountant. His brother has Down syndrome and is about to graduate from high school.

29 year old married Female, special education teacher and director of Special Olympics.
Her sister is an adult who has had various disability labels (ED, MPD, severe depression)
and lives in house provided by developmental services group.

27 year old married Female, PhD whose 22 year old brother with Down syndrome has no
day activities and lives with his parents. No other sibs.

20 year old single Female, college student (studying special education,) whose 13 year old
sister with autism goes to school and lives with parents.

25 year old single Male, currently a landscaper, recently diagnosed bi-polar, who lives
with his parents and 33 year old sister. His sister with ID has a day placement and also
lives with their family

29 year old married Female with 3 children, case manager and job coach. Her 28 year old
sister has ID. Typical sib has taken full responsibility for her sister with disabilities since
age 20 when their mother died. Sib with ID lives with sister’s family and works at sheltered
workshop where sister works.
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Results: Siblings Are Healthy
Construct
Scoring
Sib Ratings
Physical Health
1-5; 5 is positive
3.62 (0-5; SD 1.04)
Relationship
Benefits
0-30; 30 is positive
23.81 (0-30; SD 5.00)
Depression
0-20; 20 is
negative
8.12 (0-19; SD 3.35)
Positive Strengths 0-35; 35 is positive
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31.37 (0-35; SD 4.30)
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Most siblings have close relationships
Contact
Daily
Several times/week
Weekly/biweekly
Monthly
> Monthly
30.7%
24.3%
29.7%
6.3%
9.0%
Is time
enough?
Not enough
Somewhat not enough
About right
Some what too much
25.9%
31.2%
33.9%
9.0%
How much
affection?
Extremely/ Very much
Pretty much/somewhat
Not much
74.6%
20.1%
4.2%
How close?
Extremely/Very much
Pretty much/ somewhat
Not much/not at all
69.3%
20.0%
10.7%
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Sibling Closeness Has Many Forms
Theme
Examples
Very close
“We are VERY close. I see her or talk to her
every day…She is a very important part of my
life.”
“It is a very close and caring relationship built
on years of trust and understanding.”
Close, Typical Sibling is like
a mother
“I have a close relationship with my sister.
When my parents aren’t there, I treat her more
like she I my child making sure everything she
needs is taken care of”
“Often, I take over the mommy role.”
Close, Typical Sibling
provides instrumental/
affective support
“We have a very close relationship. I have
taken care of him a lot since he was born. I
currently spend most of my week watching him
and help home school and tutor him”
Close, but changes would
help us be closer
“Good. But I would like to live closer so we
could see each other more.”
“It is better. She is now correctly being treated
for her behavior problems, which we tried for
years to get.”
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closeness….
 “ My sister is my inspiration in my life.
I do not think that I would be the
person I am today without her.
 But we also have a very real side of our
relationship. We sometimes disagree
and pick on each other just like any
siblings do.
 Having a a sister with a disability does
not mean that our relationship is not as
close as typical siblings’
relationships…
 I would argue my relationship with my
sister is better because we have to
depend on each other”
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Another Voice: Siblings With
Disabilities “closeness”
 “She makes a lot, a lot of effort to spend
special time with me...just good buddies.”
 “He has gotten a little bit closer, but
sometimes he would only talk to me
about issues with my parents…like do
you want to split a gift”
 She used to play SimsII with me, That’s
after she softened up..after we became
less fierce with each other.
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Sibling closeness may be moderated by behavior
6
5
4
Understand
Trust
Fair
3
2
Respect
Affection
1
0
Behavior Behavior Behavior
(1-2)
(3)
(4-5)
•Behavior Ratings: Not a problem (1-2), Somewhat of a problem (3), Very
much a problem (4-5)
•These items come from the Positive Affect Index (Bengston & Black, 1973).
The scaling is from 1-6 with 1 being not at all and 6 being extremely. For
example, “How much do you respect your brother/sister?”.
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Sibling mental health may also be moderated by behavior
2.5
I felt depressed
2
My sleep was
restless
I felt lonely
1.5
1
0.5
0
Behavior Behavior Behavior
(1-2)
(3)
(4-5)
I could not get
going
I had crying
spells
•Behavior Ratings: Not a problem (1-2), Somewhat of a problem (3), Very much
a problem (4-5)
•The CES-D was used to examine health on a five point scale (1: Rarely and 5
being most or all of the time).
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How do siblings feel about the behavior of their brothers
and sisters?
•He needs more behavioral therapy; he needs a consistent therapist to
work on anger control and social skills.
•I think she would benefit from some kind of counseling or behavioral
therapy. I think it would make a huge difference in her relationship with all
of her siblings.
•I love him to death but sometimes he throws bad fits with me and it makes
me upset because it seems like he doesn’t want to be around me but I
know inside that he does.
•My brother is angry much of the time he is with me. He screams at me
and curses me and slams doors and kicks things…I am afraid of him as he
loses his temper easily, so I do not look forward to spending time with him.
What is your future role in your sibling’s life?
 Most siblings expect to
have primary or shared
responsibility for their
brother or sisters (70%)
 Relatively few are current
legal guardians (19%)
 Although only 18% said
they were unclear about
their future role, most
reported specific plans had not
been made
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Areas of Future Guardianship
Area of Guardianship
Residential Arrangements
Level of Responsibility
47.1% Will have primary resp.
29.6% Will have shared resp.
12.7% Others will have resp.
10.6% I don’t know
Financial Arrangements
43.9% Will have primary resp.
25.9% Will have shared resp.
15.3% Others will have resp.
14.9% I don’t know
Interact with Service System
48.1% Will have primary resp.
24.8% Will have shared resp.
10% Others will have resp.
17.1% I don’t know
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Another Voice: Siblings With
Disabilities “future living situation”
 “I do better on my own…I’ve had
roommates and it turned our really
bad...I am really messy… I still prefer
living on my own.”
 “With friends.”
 “Different kind of place…some
friends…far (from parents)”
 “I guess living with my sister."
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Future independence for sibling with
disability
 “He’s talked to me about moving..closer to where (Mom)
lives. But he doesn’t know yet. Mom was thinking about
buying the condominium across the breeze way.
 I was thinking that was convenient, in case his care provider
didn’t show up or somebody got sick.”
 He said “Mom too close, too close.”
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Concerns for the future
 “I’m just scared about what I’m going to do the day that my parents aren’t here and I
might have a husband and kids of my own and how I am supposed to take are of my
sibling.”
 “I think one of the scariest things about being a sibling of someone with a severe
disability is the knowledge that someday you will probably end up being their
caretaker”
 “It is my concern that should my mother become unable to care for my sibling, I
would be left in the dark on how to handle his needs.”
 “I do not know what my parents’ plans are or what they have saved for his support in
later years.”
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Hope for the Future
“I hope that he has got a job. I hope that some great person takes a chance on him
and gives him opportunity to do whatever it is that he can…that fulfills him the most
with his career. And, I expect him to be living on his own. And, I don’t know how it
will all work.”
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What would make it easier to support
your sibling?
 A plan for the future
 Information about sibling’s




disability and future abilities
Information about resources in
community
Meeting specific needs of the
sibling with disabilities
Respite or assistance in caring for
my sibling, for parents now and
later for myself
Living closer
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Top 10 Needs of Siblings with Disabilities in
Tennessee
1. Information & referrals for
2.
3.
4.
5.
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services (25.6%)
Day services (25.8%)
Dental care (21.5%)
Job placement/support
(20%)
Post Secondary Education
(19.9%)
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6. Behavior Intervention/therapy
(19.2%)
7. Residential placement (15.3%)
8. OT, PT or Speech (15.0%)
9. Case management (14.8%)
10. Respite care (14.7%)
What siblings would like parents of children with
disabilities to know
 Be informed about your child’s








disability
Plan for the future
Know what services are available
Be patient
Get respite care
Get support for your self
Challenge your child with a
disability
Spend time with your typical child
Give your child unconditional love
Question 177; qualitativeAUCD
analysis
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Summary: Who are adult siblings?
§
Adult siblings are healthy, positive
young people

Their siblings with disabilities are
important to them and most of
them spend time with them every
week.
§
Their relationships with their
siblings are generally positive
§
They expect these relationships to
remain positive, or grow more
positive in the future
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Summary: Who are adult siblings?
 Majority assume they will have
or share responsibility for
sibling in the future
 Very few have a specific plan
for the future
 Few know details of siblings
needs or potential for
independence
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Policy and Practice Implications
 Provide futures planning that includes adult siblings
especially as they make life choices
 Provide information
 About siblings’ disabilities, needs, skills, potential
 Community options for living, working, education
 About family resources, plans
 Provide support related to being a sibling
 Contact with other siblings
 Counseling and informal supports as needed
 Address critical behavior support needs of individuals with
disabilities
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Special Thanks To:
 TN Council on Developmental Disabilities
 TN Family Support Program
 Rick Urbano and Bob Hodapp
 Megan Roberts and Andrew MacFarland
 Sibling Research Consortium
 The Arc of the US
 Adult siblings and their families who participated in our study
 Tom Weisner and Eli Lieber
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For more information
 Ann Kaiser & Meghan Burke
 Department of Special
Education, Box 228
 Vanderbilt University
 Nashville, TN 37203
 [email protected]
 [email protected]
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