Social Supports for Individuals with Disabilities Impacted by Disaster

1. Laura M. Stough, Ph.D. Amy N. Sharp, Ph.D. Elizabeth McAdams Ducy, M.Ed. Texas A&M University Social Supports for Individuals with Disabilities Impacted by Disaster

2. http://www.katrinadestruction.com/images/v/fema+trailers/17kd411-katrina-destruction.htmlhttp://www.katrinadestruction.com/images/v/fema+trailers/17kd411-katrina-destruction.html

3. M. Scott Mahaskey/Army Times/AP

4. Eric Gay/AP

5. Eric Gay/AP

7. 23% with Disabilities Hurricane Katrina • 1.5 Million Impacted

8. Children with Disabilities • Children and persons with physical or mental disabilities, and immigrants have been identified as especially vulnerable to the harmful impacts of disaster (Cutter et al., 2003). • Given that vulnerability factors tend to “cluster,” certain segments of the population, such as children with disabilities, often suffer amplified risk in disaster (Phillips & Morrow, 2007, p. 63).

9. Children with Disabilities • Children with disabilities may be in danger of suffering life-threatening consequences in the aftermath of disaster due to separation from parents and other caregivers (Peek & Stough,2010). • Most children do not develop new psychopathologies beyond post-traumatic stress disorder (PTSD) and are psychologically resilient following disaster, particularly when they receive appropriate support from a parent or other close adult (La Greca et al., 2002).

10. In addition, children with disabilities have social networks that tend to be smaller and more fragile (Smart, 2001), and thus losing a parent or another person in their limited support system – either due to death, physical separation, increased demands in other areas, or stress – could result in additional trauma for these children (Peek & Stough, 2010). Eric Gay/AP

11. 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 http://www.katrinadestruction.com/images/v/survivors/17kd290-after-wheelchair-survivor.html

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

13. Design of the Study • Face-to-face in-depth interviews with 39 individuals with intellectual disabilities (ID) or diabetes which include questions about their • Daily life and supports pre-disaster • Disaster narrative • Daily life and supports three years post-disaster • Telephone surveys with 200 individuals with ID or diabetes • 65 items based on qualitative results • 12 demographic items • Two focus groups: Texas and Louisiana

14. Interview Participants

15. Interview Participants

16. Interview Participants

17. Survey Item Categories • After 39 face-to-face interviews were completed, transcribed, and coded, Grounded Theory was used to identify primary emerging categories. Some of these categories included: • Housing • Employment • Transportation • Social supports • Recreation • Spiritual Activities • Medical well-being

18. 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

19. 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- People or organizations that provide added capacity to either individuals or families.

20. Properties of Social Supports • Proximity • Frequency of interaction • Diversity of people • Intimacy with neighbors • Formality of supports • Cohesion of family

21. Proximity • Close vs. Distant • Before: • In the same house, neighborhood or city before the storm, “family house” • Contacts were frequent • After: • Not able to visit family and friends because of distance • Not able to “reach out and touch them”

22. 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.”

23. Proximity “ It’s [life] boring. Besides my Auntie, I had a friend that I loved. I left them because it’s to 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

24. Frequency of Interaction • High vs. Low • Some with no contact at all • Instead of physical daily/near daily interaction now infrequent phone calls

25. 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.”

26. 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

27. Diversity of People • High vs. low diversity • Influences amount and type of activities • Influences access to transportation, daily living finances, leisure and recreation

28. 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

29. 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

30. Intimacy with Neighbors • High vs. low intimacy • Before • Neighbors were friends • Considered leisure time hanging out with neighbors • After • No contact with neighbors • Some do have contact with neighbors and they are supports • No longer have a sense of belonging to neighborhood

31. Intimacy with Neighbors   ”The apartment building I lived in sometimes I would go downstairs in the lobby area and there was a room with my neighbors and we would go down there and talk and stuff and watch T.V. There was a big screen T.V. and we would be down there and congregate and talk. I would congregate with my neighbors in the afternoon.” Immanuel

32. 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.”

33. Formality of Supports • Informal vs. formal • Loss of informal supports • Increased interaction with paid social service providers • Family members become formal

34. Informality of Supports “She (sister) took care of me. She took care of me get my medicine and fix my food. My sister cause she got a car and stuff……My sister she go she would take me shopping well the days I was feeling good we go shopping.” Ethel

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. Cohesion of Family Separated and Scattered Together And Gathered

37. 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

38. 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.”

39. Social Supports

40. Project REDD (Research and Education on Disability and Development)

43. Laura M. Stough, Ph.D. lstough@tamu.edu Amy N. Sharp, Ph.D. http://redd.tamu.edu