Social Supports and Long-term Recovery for Individuals with Disabilities

1. Social Supports and Long-term Recovery for Individuals with Disabilities Laura M. Stough, Ph.D. Elizabeth McAdams Ducy, M.Ed. Texas A&M University Project REDD: Research and Education on Disability and Disaster Center on Disability and Development

2. Eric Gay/AP

4. www.katrinadestruction.com

5. 23% with Disabilities Hurricane Katrina • 1.5 Million Impacted

6. Past Research on Disaster and Disabilities • People with disabilities are often excluded from emergency preparedness planning (Fox, White, Rooney, & Rowland, 2007) • Adults with disabilities are less likely to evacuate (Dash & Gladwin, 2007) • Adults with mobility impairments are at increased risk for mortality (Aldrich & Benson, 2008) • Social distancing, and institutional exclusion can further threaten the physical health in the aftermath of disaster (Hemingway & Priestly, 2006)

7. Definitions • Definition of Disaster- • When resources needed due to an unexpected impact exceed the capacity of a community or individual to respond to the impact. • Definition of Social Supports- • “Those social interactions or relationships that provide individuals with actual assistance or that embed individuals within a social system believed to provide love, caring, or sense of attachment to a valued social group.” (Hobfoll, 1998).

8. Social Supports Turn to one or two people next to you. Describe briefly the people who are your primary social supports.

9. Social Supports and Disaster • Survivors seek to reestablish social bonds as quickly as possible following disaster (Reich, 2006). • Social supports can have psychosocial benefits on individuals impacted by disaster (Norris & Kanistay, 1996). www.katrinadestruction.com

10. Social Supports and Disaster • Research on disaster suggests that people with disabilities may be more vulnerable, in part, because of the composition of their social networks. • Individuals with disabilities may have fewer social supports (Van Willigen et al., 2002). • Tierney et al. (1988) suggest that the social distancing associated with the label of “disabled” may further limit access to social networks and others sources of psychological support during a disaster Eric Gay/AP

11. Design of the Study • Face-to-face in-depth interviews with 39 individuals with disabilities (ID) • Daily life and supports pre-disaster • Disaster narrative • Daily life and supports three years post-disaster • Telephone surveys with 59 individuals with ID or diabetes • Two focus groups: Texas and Louisiana

12. Interview Participants

13. Interview Participants

14. Interview Participants

15. Survey Item Categories • After 39 face-to-face interviews were completed, transcribed, and coded, grounded theory was used to identify primary emerging categories. • Conceptual categories- • Social Supports • Housing • Employment • Transportation • Access to Recovery Services • Recreation • Spiritual Activities • Medical Well-Being • Disability Related Supports • Emotional and psychological responses

16. The Central Phenomenon: Social Supports • Social supports was the most prominent category revealed through the analysis • Social supports was a topic referenced in all 39 interviews • Social supports was referenced a total of 311 times across all interviews

17. Turn to one or two people next to you. Describe briefly who you think would be your primary social supports if you had to evacuate over 100 miles from your home. Which of your social supports changed from your first answer?

18. Example of Social Supports Social Supports Social Supports-100 miles

19. Properties of Social Supports • Proximity to supports • Frequency of interactions • Cohesion of family • Intimacy with neighbors • Diversity of people • Formality of supports

20. Proximity • Before: • Close proximity • Often living in same house or neighborhood • After: • Proximity significantly distanced • Separation affected the participants regardless of actual distance

21. Proximity Interviewer: “Did your family live right there by you or close?” Karen: “Oh yeah, I lived on this side, I live 1609 and my sister live 1611. It was a family house and we have been around here since 1953.”

22. Proximity “ It’s [life] boring. Besides my Auntie, I had a friend that I loved. I left them because it’s too far away. People won’t come way down here to get you. They considered this a long ways from Baton Rouge and a long ways from New Orleans.” Wanda

23. Frequency of Interaction • Before • High interaction • Often Daily interaction • After • Infrequent interaction • No contact at all

24. Frequency of Interaction Interviewer-”Who did you see almost everyday before Katrina?” Mark- “My family. My brothers and sisters yeah. There is eight of us, four boys and four girls.” Interviewer-”Those are the people you spent your time with everyday?” Mark- “Right, right. Some kind of way or another.”

25. Frequency of Interaction • “So it has been rough trying to get back we have been back one time but we was enjoying life was sweet like my kids tell it they really miss their friends people that we have not seen in a long time.” Kate

26. Cohesion of Family • Before • Cohesive • Gathered • After • Scattered • Unaware of location

27. Cohesion of Family “Like I said I still can’t reach out and touch my sisters, none of them. Things are just bad. Seeing them everyday. Now everybody just spread all over. My other sister she in where she at lets see if I can think of the name somewhere her and her daughters, my nieces where they at man I can’t even think of the name.” Mark

28. Cohesion of Family • Interviewer: Are there any other members of your family that live nearby? You said you had a son in Corpus Christie?” • Mike- “That’s my only one. Everyone else, I don’t know where they at. I don’t know if they're dead, I don’t know if they are alive.”

29. Intimacy with Neighbors • Before • Neighbors were friends • Considered leisure time hanging out with neighbors • After • The majority had low or no contact with neighbors • Some participants described contact as “checking in” but not friends • The few that did describe neighbors as friend had the shared experience of Katrina

30. Intimacy with Neighbors Interviewer- “Do you know people in the neighborhood?” Immanuel- “No, I might greet them hello, goodbye, maybe my neighbor downstairs. But I mean I don’t congregate with anyone in particular around here.”

31. Diversity of People • Before • Included a variety of individuals • Influenced amount and type of activities • Influenced access to transportation, daily living finances, leisure and recreation • After • Social supports less diverse • Lowered frequency and type of activities • Limited access to other supports

32. Diversity of People “My friends and I we have certain times we would get together, you know, like on Friday we would go to the market or if I had some place or some of them, a couple of them would meet me down there we would go to lunch at a café in St. Peter’s square, we would go there and have a sandwich and sometimes we would go to the park.” Faye

33. Diversity of People “I don’t have no friends. The only friends I have right now is my wife.” Mike “I don’t know nobody here.” Efron

34. Formality of Supports • Before • Informal • Anticipated needs • After • Formal • Difficult to ask for help

35. Informality of Supports “ My church family and my family I could always go to them for help. I didn’t necessarily have to ask all the time they know my limits, they knew my limits. I miss those people its different here. I was comfortable with my family and people from my church and the few friends in the neighborhood I had. Like I said people knew, I had friends you didn’t have to ask for anything you know. Its different here real different here.” Joe

36. Survey Results II. Telephone surveys with 59 individuals with ID or diabetes • 65 items based on qualitative results • 12 demographic items

37. Social Supports

38. Linkage With Other Categories • Housing • Employment • Transportation • Access to Recovery Services • Recreation • Spiritual Activities • Medical Well-Being

39. Summary • Social supports were important to these participants both before and after the storm • All of the participants lost close and loved supports as a result of the disaster and its aftermath • The configuration of these supports changed significantly after the storm. They became: • Smaller • Less varied • More formal • Less familiar • More delicate

40. Laura M. Stough, Ph.D. lstough@tamu.edu http://redd.tamu.edu