2008 SURVEY FOR PEOPLE LIVING WITH DISABILITIES

1. 2008 SURVEY FOR PEOPLE LIVING WITH DISABILITIES Office of Social Service Research & Development Louisiana State University

2. SURVEY FOR PEOPLE LIVING WITH DISABILITIES • Effort to better comprehend the needs of people living with disabilities in Louisiana • Joint effort by the Department of Health and Hospitals, Office of Citizens with Developmental Disabilities, Office of Mental Health • Research conducted by Dr. Cecile Guin, Laura Meiki & Meredith Anderson from the Office of Social Service Research & Development at LSU • Second wave of data collection in a larger research effort that began in 2004

3. DEVELOPMENT OF 2008 SURVEY • Used 2004 survey and a preliminary draft composed by Elaine Richard and the MIG advisory council as a starting point • Revised by OSSRD research staff • Conducted 3 focus groups to receive additional feedback • Corresponded with focus group members over email about subsequent revisions and drafts • Finalized survey instrument in December 2007

4. DIFFERENCES BETWEEN 2004 & 2008 • Changes to survey structure • Length (2x as long) • New sections (emergency preparedness, independent living, employment, personal finances) • Use of shaded, indented boxes to indicate skip patterns • Changes to survey content • General changes • No satisfaction questions • Focus on supports used, supports needed, why needed supports not received • Specific changes • More response categories added, new sections, check all that apply • “Who is answering this survey?” and “Why is someone helping you?”

5. SAMPLES & RESPONSE RATES • 2004: 8000 surveys mailed, 1099 usable responses collected • 2008: 9970 surveys mailed. 921 usable responses collected • Samples drawn from different lists • Longer surveys deter respondents • Requested detailed financial information • Differences in surveys available online • Demographic changes since hurricanes

6. SAMPLES & RESPONSE RATE • It is likely that the 2 surveys sampled very different populations • DHH Region: percentage of respondents from Region 1 (Orleans, St. Bernard. Jefferson) and Region 5 (Cameron Parish) decreased by 5% each • Racial-Ethnic Composition: 2004 had 66% Caucasian and 29% African American respondents, while 2008 had 51% African American and 46% Caucasian • Socioeconomic status: 2004 respondents reported paying much more for housing • Health Insurance: 55% of 2004 respondents and 72% of 2008 respondents report Medicaid coverage • It is also important to note that neither survey attempted to draw a random, representative sample

7. USES AND LIMITATIONS OF DATA • Most questions are multiple response items – “check all that apply” – so results will add up to more than 100% • Population varies by question • These data should not be interpreted as: • Statistically significant • Proof of causal relationships • These data can: • Evidence areas in which further research is needed • Call attention to well pronounced trends • Inform future policy discussions

8. METHODOLOGY • January 2008: survey packets mailed to 9970 individuals randomly selected from the following lists: • 140 from OCDD • 1162 from OMH • 7829 from Medicaid eligible list • 839 from Medicaid rejected list • Surveys mailed in English, but alternate formats available in Spanish, Vietnamese, Braille, large print, and over video relay • Respondents could either mail survey, take it online, or take it over the phone

9. METHODOLOGY • The standard format contained 61 questions (54 multiple choice) • 13 sections: General Information, Health Care, Independent Living, Assistive Technology, Transportation, Housing, Education, Employment, Finances, Civic Involvement, Emergency Preparedness, General Comments • Data analyzed by OSSRD staff using distribution analysis

10. GENERAL INFORMATION

11. GENERAL INFORMATION

12. GENERAL INFORMATION

13. GENERAL INFORMATION

14. GENERAL INFORMATION

15. GENERAL INFORMATION • Crosstabulation analysis of “Who are you?” and “Why is someone helping you fill out the survey?”

16. GENERAL INFORMATION

17. GENERAL INFORMATIONWHAT IS YOUR DIAGNOSIS?

18. GENERAL INFORMATION

19. GENERAL INFORMATION

20. GENERAL INFORMATION

21. GENERAL INFORMATION

22. GENERAL INFORMATION

23. GENERAL INFORMATION

24. GENERAL INFORMATION • Where do you get information about services? (866 responses, 55 missing) • Healthcare providers 471 (20%) • Relatives/friends 441 (19%) • Television 286 (12%) • Agencies 256 (11%) • Mail 226 (10%) • Newspapers 148 (6%) • Newsletters 119 (5%) • Internet 118 (5%)

25. HEALTH CARE

26. HEALTH CARE

27. HEALTH CARE

28. HEALTH CARE

29. HEALTH CARE

30. HEALTH CARE

31. HEALTH CARE • Crosstabulation of “What medical services do you use on a regular basis?” and Age

32. HEALTH CARE • Crosstabulation of “What services do you need but not get?” and Age

33. HEALTH CARE • Crosstabulation of “How much do you pay for insurance?” and Age

34. HEALTH CARE • Crosstabulation of “Why don’t you get the care you need?” and Age

35. HEALTH CARE • Crosstabulation of “How much do you pay for other medical expenses?” and Age

36. INDEPENDENT LIVING

37. INDEPENDENT LIVING

38. INDEPENDENT LIVING

39. INDEPENDENT LIVING

40. INDEPENDENT LIVING

41. INDEPENDENT LIVING

42. ASSISTIVE TECHNOLOGY

43. ASSISTIVE TECHNOLOGY

44. ASSISTIVE TECHNOLOGY

45. ASSISTIVE TECHNOLOGY

46. ASSISTIVE TECHNOLOGY

47. TRANSPORTATION

48. TRANSPORTATION

49. TRANSPORTATION

50. TRANSPORTATION