1. Ann P. Kaiser & Meghan Burke Vanderbilt Kennedy Center Vanderbilt University Nashville, TN USA AUCD November 2009 1 Adult Siblings of Individuals with Developmental Disabilities: Factors Affecting Closeness and Future Caregiving

2. Sibling Relationships Are Important Longest lasting family tie Sharing family heritage, genetically, experientially Ideal sibling relationship: egalitarian, reciprocal and mutual AUCD November 2009 2

3. 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 AUCD November 2009 3

4. Adult Siblings AUCD November 2009 4 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 )

5. Research Questions AUCD November 2009 5 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?

6. Method I AUCD November 2009 6 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

7. AUCD November 2009 7

8. Study Method I AUCD November 2009 8 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

9. Study Method II AUCD November 2009 9 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 oWhat is your relationship like with your brother or sister now? oHow has your relationship changed in the last 5 years? oWhat do you expect your relationship to be like in the next 5 years?

10. Participants Sample Characteristics (N=190) Age37.6 yrs (Range: 18-71; SD=14.2) Gender79% Female Ethnicity93% White 3% African American 4% Other Education41% High School 37% College 22% Master’s or PhD Marital Status33% Never married 52% Currently married 10% Divorced/Separated 5% Widowed AUCD November 2009 10

11. Their Siblings With Disabilities AUCD November 2009 11 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.

12. Some of our sibling pairs AUCD November 2009 12 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.

13. Results: Siblings Are Healthy ConstructScoringSib Ratings Physical Health1-5; 5 is positive3.62 (0-5; SD 1.04) Relationship Benefits 0-30; 30 is positive23.81 (0-30; SD 5.00) Depression0-20; 20 is negative 8.12 (0-19; SD 3.35) Positive Strengths0-35; 35 is positive31.37 (0-35; SD 4.30) AUCD November 2009 13

14. Most siblings have close relationships ContactDaily 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% 14 AUCD November 2009

15. Sibling Closeness Has Many Forms ThemeExamples 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.” AUCD November 2009 15

16. 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” AUCD November 2009 16

17. “ closeness” 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. AUCD November 2009 17

18. Sibling closeness may be moderated by behavior 18 AUCD November 2009 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?”.

19. Sibling mental health may also be moderated by behavior 19 AUCD November 2009 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).

20. 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.

21. 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 AUCD November 2009 21

22. Areas of Future Guardianship AUCD November 2009 22 Area of GuardianshipLevel of Responsibility Residential Arrangements47.1% Will have primary resp. 29.6% Will have shared resp. 12.7% Others will have resp. 10.6% I don’t know Financial Arrangements43.9% 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 System48.1% Will have primary resp. 24.8% Will have shared resp. 10% Others will have resp. 17.1% I don’t know

23. future living situation” 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." AUCD November 2009 23

24. Future independence for sibling with disability AUCD November 2009 24 “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.”

25. 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.” AUCD November 2009 25

26. 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.” AUCD November 2009 26

27. 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 AUCD November 2009 27

28. Top 10 Needs of Siblings with Disabilities in Tennessee AUCD November 2009 28 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%)

29. 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 AUCD November 2009 29 Question 177; qualitative analysis

30. 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 AUCD November 2009 30

31. 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

32. Policy and Practice Implications AUCD November 2009 32 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

33. Special Thanks To: AUCD November 2009 33 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

34. For more information Ann Kaiser & Meghan Burke Department of Special Education, Box 228 Vanderbilt University Nashville, TN 37203 Ann.Kaiser@vanderbilt.edu Meghan.M.Burke@vanderbilt.edu AUCD November 2009 34