1. Confronting Multiple Oppressions: Examining the Needs of People with Disabilities who are of Hispanic / Latino descent Kimberly Taylor, Joel Irizarry & Kris Balfanz-Vertiz Schwab Rehabilitation Hospital Chicago, IL Funded by Hollister, Inc.

2. Study Setting Schwab Rehabilitation Hospital Schwab Rehabilitation Hospital Extended Services Department Extended Services Department Centro de Vida Independiente Centro de Vida Independiente

3. PWD are among the poorest & most stigmatized people in the world Hispanic population is the fastest growing minority group in the U.S. Hispanic population is the fastest growing minority group in the U.S. 24.0% of working-age Hispanics have a disability; compare to 18.6% in Caucasians 24.0% of working-age Hispanics have a disability; compare to 18.6% in Caucasians

4. Health disparities are seen in many areas including vaccinations, insurance coverage, some types of cancer, HIV, hepatitis, diabetes, & TB. Health disparities are seen in many areas including vaccinations, insurance coverage, some types of cancer, HIV, hepatitis, diabetes, & TB. Neither health nor social services have increased at same rate as need. Neither health nor social services have increased at same rate as need. Employment is associated with increased life satisfaction and Quality of Life (QOL) scores. Employment is associated with increased life satisfaction and Quality of Life (QOL) scores.

5. Schwab’s Needs Assessment Surveys (Phase 1) Interviews (Phase 2) 71 participants 71 participants 31 phone, 40 F2F 31 phone, 40 F2F Outpatient clinic, outpatient therapy, Extended Services Outpatient clinic, outpatient therapy, Extended Services 6 interviewers, 4 were bilingual 6 interviewers, 4 were bilingual 87% conducted in English; 13% Spanish 87% conducted in English; 13% Spanish 20 participants 20 participants All were face-to-face All were face-to-face Phase 1 (12 people), Extended Services, community partners Phase 1 (12 people), Extended Services, community partners 6 interviewers, all conversationally bilingual – 3 fluent 6 interviewers, all conversationally bilingual – 3 fluent 80% in English; 20% in Spanish 80% in English; 20% in Spanish

6. Primary Domains Studied Demographics Demographics Employment Employment Education Education Housing Housing Benefits & Social Services Benefits & Social Services Transportation Transportation Health & Medical Health & Medical

7. Demographics SurveysInterviews Participant Sex 82% male 18% female 80% male 20% female Participant Age Median age: 37 (18-84) Median age: 29 (20-47) Participant Ethnicity 69% Mexican 24% Puerto Rican 7% Ecuadorian 7% Ecuadorian 55% Mexican 35% Puerto Rican 15% Guatemalan

8. Demographics SurveysInterviews Marital status 32% Married 49% Single (never been married) 16% separated, divorced or widowed 3% other 3% other 15% Married 70% Single (never been married) 15% separated, divorced or widowed Children 61% have children 15% have children

9. Demographics SurveysInterviews Born in the U.S.? 48% born in the U.S. (includes 9% born in Puerto Rico) 65% born in the U.S. (includes 10% born in Puerto Rico) If not born in the U.S., then where? 92% Mexico 3% Ecuador 3% Ecuador 5% missing 5% missing 71% Mexico 29% Guatemala

10. Demographics SurveysInterviews If not born in the U.S., how long have participants been here? Median: 21 years (“Just arrived” to 65 years) Median: 13.5 years (3 – 28 years) If not born here, what is residency or immigration status? 38% Legal resident 32% Naturalized citizen 19% Undocumented resident 5% visa 5% visa 5% unknown 5% unknown 13% Legal resident 13% Naturalized citizen 63% Undocumented resident 13% unknown 13% unknown

11. Demographics SurveysInterviews What is your disability? 36% SCI 16% Stroke 12% Mobility 8% BI 8% BI 6% Amputee 6% Amputee 27% other 80% SCI 5% Mobility 5% Mobility 5% Hard of hearing 5% Hard of hearing 5% Polio 5% Polio 5% Spinal Bifida 5% Spinal Bifida Acquired or congenital? If acquired, when? 97% were acquired. Median: 5 years ago. (3 mos. – 30 years) 90% were acquired. Median: 6 years ago. (1 – 36 years)

12. How did participant acquire disability?

13. Demographics (Survey) Language – Speak English: 57% fluent, 34% some, 9% none 57% fluent, 34% some, 9% noneSpanish: 87% fluent, 10% some, 3% none 87% fluent, 10% some, 3% none Language – Read and Write English: 54% fluent, 19% some, 27% none 54% fluent, 19% some, 27% noneSpanish: 66% fluent, 19% some, 15% none 66% fluent, 19% some, 15% none Bilingualism - 29% are fluent speakers of both Spanish & English. - 29% are fluent speakers of both Spanish & English. - 88% speak at least “some” of the language in which they are not fluent.

14. Results : Employment & Education

15. Employment: Pre/Post Injury (Survey)

16. Employment (Survey) For those who are working, what is the best part of having a job and/or working? 29% Getting a paycheck; supporting family and/or myself 29% Getting a paycheck; supporting family and/or myself 29% Helping others 29% Helping others 14% Meeting new people 14% Meeting new people

17. Employment (Interview) Of the 8 interviewees who currently have a job, 7 stated that they got the interview because of contacts at a rehab hospital. Of the 8 interviewees who currently have a job, 7 stated that they got the interview because of contacts at a rehab hospital. 3 stated that having a disability was an advantage for their job, because they work at a rehab hospital or as a medical supply vendor. 3 stated that having a disability was an advantage for their job, because they work at a rehab hospital or as a medical supply vendor.

18. Employment (Interview) Why are you not working? 25% said they were discriminated against, because employers think they cannot work, due to having a disabiity 25% said they were discriminated against, because employers think they cannot work, due to having a disabiity 25% said it was because of their legal status. 25% said it was because of their legal status. 17% said it was because they have a pressure sore that needs to heal first. 17% said it was because they have a pressure sore that needs to heal first.

19. Employment (Survey) How important is it to you to find employment? 67% Very important 16% Important 12% Neutral 6% Unimportant 6% Unimportant Are you satisfied with your ability to find employment? 9% Very Satisfied 9% Very Satisfied 15% Satisfied 21% Neutral 40% Dissatisfied 16% Very dissatisfied

20. Employment (Survey) Top 5 Obstacles to Working – – Health Status / Disability (56%) – – Lack of Job Opportunities (34%) – – Transportation (30%) – – Lack of Knowledge about Opportunities (30%) – – Inability to leave house independently, due to inaccessibility (16%)

21. Education (Survey) 45% of participants dropped out before entering the 9 th grade. 45% of participants dropped out before entering the 9 th grade. 37% graduated high school. 37% graduated high school. 18% have some post-secondary education. 18% have some post-secondary education. 5% graduated college. 5% graduated college.

22. Education (Survey)

23. Education (Interview)

24. Top 5 Obstacles to Education & Employment (Survey) Employment Health status / disability (56%) Health status / disability (56%) Lack of job opportunities (34%) Lack of job opportunities (34%) Transportation (30%) Transportation (30%) Lack of knowledge about opportunities (30%) Lack of knowledge about opportunities (30%) Inability to leave house independently, due to inaccessibility (16%) Inability to leave house independently, due to inaccessibility (16%)Education Health status / disability (37%) Health status / disability (37%) Transportation (27%) Transportation (27%) Lack of knowledge about opportunities (25%) Lack of knowledge about opportunities (25%) Inability to leave house independently, due to inaccessibility (16%) Inability to leave house independently, due to inaccessibility (16%) Family obligations (15%) Family obligations (15%)

25. Housing (survey) How long lived in your neighborhood? Average 9 years (range: 3 months to 53 years) Rent/own 61% Rent 39% Own Is your name on the lease/mortgage? 53% Yes 47% No Who lives with participant? 86% Family 2% Friends 2% Friends 10% Live alone 2% Residential care -Other 2% Residential care -Other

26. Housing (survey) Enter and move around in: Bedroom? Bedroom? Kitchen? Kitchen? Bathroom? Bathroom? Living room? Living room? 93% Yes 7% No 73% Yes 27% No 94% Yes 6% No Can participant enter & exit home alone? 71% Yes 29% No

27. Social Services (Survey) Are you entitled to ANY financial benefits? 41% Yes 23% No 36% “I don’t know” or no response If yes, receiving them? 75% Yes 25% No If yes, where get information on financial benefits? (Top 3) 27% Family or Friends 27% Hospital 12% Social security office

28. Social Services (Survey) Service Are you eligible? Do you use it? YesNo?YesNo? Public Aid/TANF 46%27%27%38%57%6% Link Card 3639262474 1 DRS14216478211 SSI4231273855 5 SSDI333433246411 Section 8 housing 6415318117 IDPA/Medicaid4423334060- Worker’s comp 563323 84 8413

29. Social Services: DRS (interview) 65% of interviewees had spoken to DRS & 60% had opened cases. Services Received Interviewees Homemaker only 0 Education only 6 Vocation only 1 Homemaker & Education 1 Homemaker & vocation 1 Homemaker, education & vocation 1

30. Social Services: DRS (interview) Comments: One person who only spoke Spanish at the time of his DRS interview was interviewed in English. One person who only spoke Spanish at the time of his DRS interview was interviewed in English. Everyone who has been to a DRS office says it was accessible. Everyone who has been to a DRS office says it was accessible. Of those who gave a judgment of their experience: Of those who gave a judgment of their experience: –38% said good overall –31% said okay –31% said it was bad 23% stated staff was rude or ignored them. 23% stated staff was rude or ignored them. 38% stated that, at least with some staff, it takes too long to get services. 38% stated that, at least with some staff, it takes too long to get services.

31. Transportation (Survey) Average Number of Days per Week Participants Leave Home

32. Transportation (Interview)

33. Transportation (Survey) How satisfied are you with your ability to leave home?

34. Transportation (Survey) Source of transportation… How get to… StoreDoctor Family & Friends Work Drive25%27%25%16% Family or friends 30%38%38% 4% 4% Public trans – main lines 7% 7%11%6% 3% 3% Public trans – CDT -11%4% 4% 4% Medicar- -- Walk/roll18% 4% 1% 1% I don’t go there 20%3%23%72%

35. Transportation (Interview)

36. Medical (Survey) Currently have a regular doctor? 79% Yes 21% No Seen doctor in last 12 months? 86% Yes 14% No Have insurance? 80% Yes 20% No If yes, type of insurance? 57% Public aid 34% Medicare 14% Private insurance through employment

37. Medical (Survey) YesNo Do you see a dentist regularly? 31%69% Do you have see an eye doctor regularly? 38%62%

38. Medical (survey) How pay for prescriptions? Note: 69% take medication or perform a medical procedure daily. 52% Insurance partial coverage 27% Insurance full coverage 22% Out of pocket What do you do if you need to see a doctor? 47% Call my doctor 32% Go to emergency room 9% Call my family 9% Call my family 10% Other or nothing

39. Medical (interview) 80% of interviewees stated that they had experienced health care issues that were obstacles to other parts of their life. 25% had UTIs. (“You can continue with your life.) 25% had UTIs. (“You can continue with your life.) 20% had pressure sores. (“I couldn’t leave home;” “I had to withdraw from school.”) 20% had pressure sores. (“I couldn’t leave home;” “I had to withdraw from school.”) Other issues included broken limbs (“It’s hard to get around in a manual chair with a broken arm”); obesity due to lack of exercise, and difficulty breathing. Other issues included broken limbs (“It’s hard to get around in a manual chair with a broken arm”); obesity due to lack of exercise, and difficulty breathing.

40. Summary Many of these issues complicate other ones: Inaccessible home: can’t go to work or school Inaccessible home: can’t go to work or school Unemployed: limited insurance & finances to take care of health Unemployed: limited insurance & finances to take care of health Health issues: can’t leave home to access social services to gain new transportation options, learn about benefits, or attend school Health issues: can’t leave home to access social services to gain new transportation options, learn about benefits, or attend school

41. Now what??? Why do you choose to use certain services? (interview) Comfort – Building is accessible & I feel socially accepted there. Comfort – Building is accessible & I feel socially accepted there. Location - It’s conveniently located somewhere where I need to go for other reasons (e.g., school, hospital). Location - It’s conveniently located somewhere where I need to go for other reasons (e.g., school, hospital). Quality - The services are good; I get what I need. Quality - The services are good; I get what I need. Cost - It’s free. Cost - It’s free.

42. What can we do to make your disability / healthcare status less of an obstacle? Educate people on how to take care of their bodies. Educate people on how to take care of their bodies. Help people get into home schooling Help people get into home schooling Show people examples of successful living for PWD Show people examples of successful living for PWD Find resources for people who are undocumented Find resources for people who are undocumented Provide transportation Provide transportation Provide mentoring services Provide mentoring services Train people on new life skills Train people on new life skills Provide recreational areas Provide recreational areas(interview)

43. How can we share info? Workshops at hospital Newsletter Fliers or brochures Hospital case managers / receive info as inpatients Peer mentors Doctors Letters to homes Outpatient clinic "Just keep telling people" e-mail Advertise services in newspaper

44. How can we share info? Create a resource guide Make sure info is in Spanish Set up a system so that Ext. Services staff sees each patient before discharge Go to churches Video / DVD showing what transportation is available to people with different disabilities Outpatient therapy Conferences In-services for hospital staff Radio show

45. QUESTIONS???

46. Discussion How could your program better meet the needs of Hispanic individuals with disabilities? How does what you’ve seen here today impact your daily work?

47. For more information, please contact: Kimberly Taylor Kimberly Taylor Manager of Program Development, Evaluation & Research Manager of Program Development, Evaluation & Research 773-522-2010, ext. 5176 773-522-2010, ext. 5176 taykim@sinai.org taykim@sinai.orgtaykim@sinai.org Joel Irizarry Joel Irizarry Disability Resource Coordinator Disability Resource Coordinator 773-522-5863 773-522-5863 irij@sinai.org irij@sinai.orgirij@sinai.org