ann p. kaiser & meghan burke vanderbilt kennedy center vanderbilt university nashville, tn usa

Ann P. Kaiser & Meghan BurkeVanderbilt Kennedy Center

Vanderbilt UniversityNashville, TN

USA

AUCD November 20091

Adult Siblings of Individuals with Developmental Disabilities: Factors Affecting Closeness and Future Caregiving

Sibling Relationships Are Important

Longest lasting family tie

Sharing family heritage, genetically, experientially

Ideal sibling relationship: egalitarian, reciprocal and mutual

AUCD November 2009 2

Summary: Limitations in Current Research

Lifespan issuesAdolescence, early

adulthood, Middle adulthoodEnd of life issueChanging contexts of

services, culture, healthInterventions to

support siblingsChildhood interactionsSupports to siblings

across the lifespanCritical transitions and

decision making


Adult Siblings

AUCD November 20094

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)

Research Questions

AUCD November 20095

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?

Method I

AUCD November 20096

Tennessee Survey of Adult Sibling179 item survey containing questions about:

The typical siblingTheir sibling with disabilitiesTheir relationshipCurrent responsibilities and future plansNeeds 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

AUCD November 20097

Study Method I

AUCD November 20098

Survey distributed across the state of TNContacted family and adult service providers

throughout the state of TN to distribute notices to families

Web-based responses Individual copies emailed to familiesPaper copies made available upon requestVanderbilt Kennedy Center website

Yield: 190 responses from siblings ages 18-71 yrs

Study Method II

AUCD November 20099

Responses to 3 open-ended questions from the survey were coded for themesUsed EthnoNotes to code and group individual

responsesResponses were rated on a 5-point Likert Scale

developed for each response themeRating 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?

Participants Sample Characteristics (N=190)

Age 37.6 yrs (Range: 18-71; SD=14.2)

Gender 79% Female

Ethnicity 93% White3% African American4% Other

Education 41% High School37% College22% Master’s or PhD

Marital Status 33% Never married52% Currently married10% Divorced/Separated5% Widowed


Their Siblings With Disabilities

AUCD November 200911

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%

* 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


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.

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 31.37 (0-35; SD 4.30)


Most siblings have close relationships

Contact DailySeveral times/weekWeekly/biweeklyMonthly> Monthly

30.7%24.3%29.7%6.3%9.0%

Is time enough?

Not enoughSomewhat not enoughAbout rightSome what too much

25.9%31.2%33.9%9.0%

How much affection?

Extremely/ Very muchPretty much/somewhatNot much

74.6%20.1%4.2%

How close? Extremely/Very muchPretty much/ somewhatNot much/not at all

69.3% 20.0% 10.7%

14AUCD November 2009

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.”


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”


Another Voice: Siblings With Disabilities ““closenesscloseness””“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.


Sibling closeness may be moderated by behavior


0

1

2

3

4

5

6

Behavior(1-2)

Behavior(3)

Behavior(4-5)

Understand

Trust

Fair

Respect

Affection

•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?”.

Sibling mental health may also be moderated by behavior


0

0.5

1

1.5

2

2.5

Behavior(1-2)

Behavior(3)

Behavior(4-5)

I felt depressed

My sleep wasrestless

I felt lonely

I could not getgoing

I had cryingspells

•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).

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


Areas of Future Guardianship


Area of Guardianship Level of Responsibility

Residential Arrangements 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.


15.3% Others will have resp.


Interact with Service System 48.1% Will have primary resp.


10% Others will have resp.


Another Voice: Siblings With Disabilities “future living future living situation”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."


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.”

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.”


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.”


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


Top 10 Needs of Siblings with Disabilities in Tennessee


1. Information & referrals for services (25.6%)

2. Day services (25.8%)3. Dental care (21.5%)4. Job

placement/support (20%)

5. Post Secondary Education (19.9%)

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 futureKnow what services are

availableBe patientGet respite careGet support for your selfChallenge your child with

a disabilitySpend time with your

typical childGive your child

unconditional love

AUCD November 2009 29Question 177; qualitative analysis

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


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 AUCD November 2009 31

Policy and Practice Implications


Provide futures planning that includes adult siblings especially as they make life choices

Provide information About siblings’ disabilities, needs, skills, potentialCommunity options for living, working, educationAbout family resources, plans

Provide support related to being a siblingContact with other siblingsCounseling and informal supports as needed

Address critical behavior support needs of individuals with disabilities

Special Thanks To:


TN Council on Developmental DisabilitiesTN Family Support ProgramRick Urbano and Bob HodappMegan Roberts and Andrew MacFarlandSibling Research ConsortiumThe Arc of the USAdult siblings and their families who participated in

our studyTom Weisner and Eli Lieber

For more information

Ann Kaiser & Meghan Burke

Department of Special Education, Box 228

Vanderbilt UniversityNashville, TN 37203

[email protected] Meghan.M.Burke@vanderbi

lt.eduAUCD November 2009 34

ann p. kaiser & meghan burke vanderbilt kennedy center vanderbilt university nashville, tn usa

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