1. T RANSITION INTO A DULTHOOD FOR S TUDENTS WITH TBI Bonnie Todis, Ph.D. Center on Brain Injury Research and Training

2. cbirt. org Overview Transition under IDEA Quantitative Findings of PSO Project Employment outcomes for students with TBI Post-secondary education outcomes Community integration outcomes Qualitative Findings Educational Interventions

3. cbirt. org Typical Youth Transition School Activities Relationships Quality of Life Childhood Adult Identity Employment Independence Relationships Quality of Life Adulthood T RANSITION

4. cbirt. org Youth Transition Goals Sustains TBI School Activities Relationships Quality of Life Childhood Return to previous or optimal childhood ALTERED Development Adult Identity Employment Independence Relationships Quality of Life Adulthood

5. cbirt. org Impact of TBI in Adulthood Sustains TBI Employment Independence Relationships Quality of Life Road through Adulthood Return to previous or optimal or acceptable lifestyle

6. cbirt. org Transition Services IDEA A coordinated, results-oriented set of activities for a child with a disability. Based on the individual child’s Needs Strengths Preferences Interests

7. cbirt. org Transition Services IDEA Post school activities include: Postsecondary education Vocational education Integrated employment Including supported employment Continuing and adult education Adult services Independent living or community participation

8. cbirt. org Transition Services IDEA Instruction Related services Community experiences Development of employment and other adult living objectives When appropriate acquisition of living skills functional vocational evaluation

9. cbirt. org Transition Services IDEA Begin no later than age 16 Students on IEPs are eligible to receive special education services through age 21 Once a student graduates with a regular diploma, he is no longer eligible for transition services Eligible for disability-related supports from other agencies

10. cbirt. org Our Questions: What are the transition experiences of students with TBI? How does high school prepare them for transition? What are their transition outcomes? What factors are associated with positive outcomes? What factors are associated with negative outcomes? What is transition like for students and families?

11. cbirt. org Transition Services IDEA Mandated, but not fully funded Students with TBI are under-identified for special education and transition services Transition services are highly variable district to district disability to disability severity of disability

12. POST-SECONDARY OUTCOMES PROJECT (PSO)

13. cbirt. org Project PSO 8-year study of transition outcomes Funded by OSEP and NIDRR 90 students in Oregon and Washington Recruited at exit from high school Rolling recruitment over 2-3 years School districts VR

14. cbirt. org PSO Participants 77% had severe injuries 2/3 were identified for special education Half were injured while in high school Mean time since injury 7.7 yrs (range: 0- 19) 2/3 male

15. cbirt. org Project PSO Purpose: Systematic tracking of quantitative data on transition outcomes Methodology: In-person/phone interviews with young adult, parent 6-12-month intervals

16. cbirt. org PSO Survey Domains Education and training Education accommodations Satisfaction ratings Employment history & plans Type of work, pay, hours Employment supports & accommodations Living/rent arrangements Sources of community support Satisfaction ratings Community integration & activities Social relationships Health issues Life satisfaction

17. RESULTS

18. cbirt. org Life Transition Planning At initial interview

19. cbirt. org Written Transition Plan At initial interview Bonnie Todis, Ph.D. Center on Brain Injury Research and Training

20. cbirt. org Person Who Helped Plan Transition At initial interview

21. TRANSITION OUTCOMES

22. cbirt. org Two level longitudinal growth model: Measurement occasion nested within participant Level 1: Repeated measurement occasions γ ij = β 0j + β 1j time ij + e ij Level 2 : Participants β 0j = γ 00 + γ 00 X j + δ 0j β 1j = γ 10 + γ 11 X j + δ 1j β 0j = intercept of group j β 1j = slope of TIME of group j * (time for participant ij) e ij = residual for measurement i within participant j γ 00 and γ 10 are intercepts (of initial status and rate of change) γ 01 and γ 11 are slopes (regression coeff) predicting β 0j and β 1j from variable X j. X j = Level 2 person variables (gender, age@injury, severity, etc.) Level 1 = Outcomes at times 1 – t Level 2 = participant characteristics

23. cbirt. org Advantages of modern longitudinal methods are that we can: Use data with different #s data points and waves of data, can use all cases, and multilevel data structures [meas occasion within person within community] Evaluate changes over time [within-person variance]: Does employment increase, decrease, stay same over time? Model the effects of participant characteristics as predictors [between-person variance]: gender, age at injury, severity Test cross-level interactions of person variables(L2) with time (L1) : Does gender(L2) effect rate of change in employment over time (L1)? Key advantages: Flexibility and use of multi-level data

24. cbirt. org Employment Outcomes Ages 19-25 Age 19 ( n = 54) 20 ( n = 74) 21 ( n = 85) 22 ( n = 86) 23 ( n = 84) 24 ( n = 75) 25 ( n = 55) Employment 20 (37)36 (49)44 (52)42 (49)37 (44)35 (47)33 (60) Male 17 (46)23 (49)34 (60)34 (59)29 (52)26 (54)26 (74) Female 3 (18)13 (48)10 (36)8 (29) 9 (33)7 (35) <20 hrs/week 11 (55)18 (53)13 (32)14 (35)11 (31)10 (30)9 (29) ≥20 hrs/week 9 (45)16 (47)28 (68)26 (65)25 (69)23 (70)22 (71)

25. cbirt. org Post-Secondary Employment Outcomes 19-25

26. cbirt. org Closer Look: Employment at Age 25 60% employed 74% of males, 35% of females Hours per week Mean 21-30 No one worked more than 30 hrs per week

27. cbirt. org Employment Outcomes by Gender

28. cbirt. org Employment at Age 25 Wages Mean $8.22 per hour No difference between males and females Type of Job 81.3% in menial, unskilled, or semi-skilled categories The rest in skilled (11.3%) clerical/sales (5%) or technicians (2.5%) None in the top 3 categories

29. cbirt. org Comparison with Typical Peers EMPLOYMENT RATE WAGES PER WEEK HOURS PER WEEK TYPE OF JOB PSO Sample 60% $161-232 (male) $124-418 (female) 25.5 hrs 57%menial/unskilled 0%management/pro Typical Young Adults 68% $485 (male) $418 (female) 35.8 hrs 36%menial/unskilled 19%management/pro Bureau of Labor Statistics of the U.S. Department of Labor, January 19, 2007

30. cbirt. org Factors Predicting Employment Hierarchical Linear Modeling Results Family SES: Those with higher SES were less likely to be employed at the beginning of the study, more likely to be employed over time For every unit change in SES there was a 3.3% increase in the odds of employment and a.7% increase in the rate of change in employment over time.

31. cbirt. org Factors That Impact Employment Later age) Earlier age Later age Earlier age Bonnie Todis, Ph.D. Center on Brain Injury Research and Training Avg age Males Females Work Category by Sex and Age at Injury Over Time Skilled manual labor Clerical, sales Semi-skilled Unskilled work Menial service Job Category by Sex and Age at Injury

32. cbirt. org Bonnie Todis, Ph.D. Center on Brain Injury Research and Training Factors That Impact Employment Early injury Later injury Wages Over Time by Age at Injury and Severity Later injury Severe Mild/Moderate Early injury

33. cbirt. org Bonnie Todis, Ph.D. Center on Brain Injury Research and Training Factors That Impact Employment Severity Hours Worked per Week Injured earlier later Severity: M/M work > # Hrs. Gender: Males> #hrs. For both genders: Earlier age at injury = work fewer hours/week Females Males Females Males Injured earlier later SevereMild/Mod 21 – 30hr 11-15hr Hours Per Week 16-20hr

34. cbirt. org Factors That Impact Employment Later age Later age Early age Avg age Early age Severe Mild/ Moderate Job Happiness by Severity and Age at Injury Avg age Happy Very Happy Unhappy

35. POST SECONDARY EDUCATION

36. cbirt. org Post-Secondary Education Outcomes Ages 19-25 Age 19 ( n = 54) 20 ( n = 74) 21 ( n = 85) 22 ( n = 86) 23 ( n = 84) 24 ( n = 75) 25 ( n = 55) Education15 (28)26 (35)34 (40)22 (26)26 (31)18 (24)14 (25) Male7 (19)17 (36)20 (35)11 (19)15 (27)7 (15)6 (17) Female8 (47)9 (33)14 (50)11 (39) 11 (41)8 (40) n (%)

37. cbirt. org Post-Secondary Education Outcomes Ages 19-25

38. cbirt. org Comparison with Peers Non disabled young adults 18-25 46% enrollment (Pew 2007) 54% female (2005) NLTS2 45% reported continuing to postsecondary ed within 4 years of leaving high school. 32% community colleges 23% vocational/tech 14% 4-year

39. cbirt. org Factors That Affect Enrollment Higher family SES, shorter time to enrollment Females more likely to enroll Those injured later were more likely to enroll. For every year increase in age at injury there was a 12.3% increase in likelihood of enrollment.

40. cbirt. org Independent Living Outcomes Ages 19-25 Bonnie Todis, Ph.D. Center on Brain Injury Research and Training Age 19 ( n = 54) 20 ( n = 74) 21 ( n = 85) 22 ( n = 86) 23 ( n = 84) 24 ( n = 75) 25 ( n = 55) Independent Living 12 (23) 26 (36)28 (35)37 (44)35 (41)37 (49)29 (53) Male7 (20)13 (28)18 (33)22 (39) 24 (49)20 (57) Female5 (29)13 (48)10 (37)15 (54)13 (45)13 (48)9 (45) n (%)

41. cbirt. org Post-Secondary Independent Living Outcomes Ages 19-25

42. cbirt. org Comparison with Peers Non-disabled peers 18-25 40% live with parents (Pew) NLTS2 ages 17-21 25% have lived independently at some time since high school (65% of these lived in a college dorm or military housing).

43. cbirt. org Factors That Affect Ind. Living Age at injury: Those injured earlier take longer to achieve independent living status. For each year older at injury, there is a 12.7% increase in odds of achieving independent living.

44. Qualitative Component

45. cbirt. org Qualitative Component Purpose: Access perspectives of youth with TBI and their parents on the transition experience Identify specific factors that promote positive outcomes Investigate the details of transition services

46. cbirt. org Qualitative Methodology Methodology: Unstructured recursive interviews Participant observations with young adult Interviews with knowledgeable others 1-to-6-month intervals

47. Qualitative Findings

48. cbirt. org Thematic Categories High School Experiences Employment Post-Secondary Education Community Integration

49. cbirt. org What Happens in High School? Students not identified for special education: Tested at or above grade level Injured junior or senior year, “helped” to graduate on time

50. cbirt. org Helped to Graduate: Academic “My mom worked at the school and all the teachers loved me, so I didn’t have to do anything, they just passed me. All I had to do was come to class. They knew what had happened to me and they felt sorry for me. They thought I was a great kid. Did they do me a favor? Yes and no. I don’t think it was that great for going to [college], but yes, because I don’t think I would’ve graduated.” ~Kristi

51. cbirt. org Not identified for SpEd No transition services No IEP Graduated No access to disability services post- graduation Usually tried to follow pre-injury plan

52. cbirt. org Receiving SpEd Services Students identified for special education: Not identified TBI Two-track system Rarely received good transition services

53. cbirt. org Themes: Two-track System College Prep Focus on graduation requirements Learning problems not like those of LD Often need social and life skills training Minimal transition services

54. cbirt. org Two-track System: Academic Typical transition plan activities: Write a resume Take an aptitude test College visitation and meeting with disability services coordinator No time for life skills Students with TBI often don’t fit in

55. cbirt. org What kids need NTLS2: Needs Life Skills %

56. cbirt. org Two-track System: Life Skills 3 to 4 years of in-school work experience supported employment life skills (bus training, social skills, independent living self-advocacy Little academic work No diploma

57. cbirt. org Two Track System: Life Skills “The teachers in my life skills program keep forgetting that I haven’t been this way my whole life. And I remember when I wasn’t this way. I can’t talk very well. I can’t walk very well. But I’m still smart. I know a heck of a lot…More than I should!” ~ Mary, injured age 9

58. POST SECONDARY EDUCATION

59. cbirt. org Themes: Pre-injury Plans Those injured in high school, and their parents, tended to pursue preinjury plans for transition. This often included college College was extremely challenging for many participants

60. cbirt. org Themes: Is it worth it? “Will I be able to perform the job I am preparing for? I can’t sit here in my parent’s house forever until I pick out the perfect career. I have to go try.” ~Jack

61. cbirt. org Strategies and Supports Some participants modified their plans Some developed effective strategies Some accessed effective supports

62. cbirt. org Critical Features of Success Parent advocacy Linkages with campus/community supports Achievable short term goals Manageable environments Community college Live at home or in small group On-going support

63. Employment

64. cbirt. org Employment Themes Got job through Life Skills Family connections Infrequent promotion Frequent job changes/unemployment Uneven performance Inappropriate behavior Impulsivity/poor judgment

65. cbirt. org Employment Successes Al: stable cleaning business Jed: tire store Jay: team trainer

66. cbirt. org Critical Features of Success Parent advocacy Life skills training (work experience, social skills, money management) Communication, training for employer On-going family support

67. Community Integration

68. cbirt. org Community Based Services Pressure on families to access services when they are offered Whether the young adult can benefit or not Example: Section 8 Housing

69. cbirt. org Critical Features of Success Family nearby Spouse Living with family Supported living

70. Promising Transition Practices

71. cbirt. org Promising Practices From young adults with TBI and families From transition research

72. cbirt. org Strategies Community College vs. 4-year college Modify timeline Access supports Reframe challenges as opportunities Live the life you have now

73. cbirt. org Strategies: Acceptance “Every day is different. Some days I can remember things, some days, not. I just take it as it comes, try not to get stressed about it.”

74. cbirt. org Strategies: Reframing “Don’t think of it as, ‘I’ve been working on a 2-year degree for 5 years.’ Think of it as doing something good for your brain, everyday.”

75. cbirt. org Strategies: Manageable Goals “I just try to take things as they happen and have little plans instead of big ones. I wish I didn’t have the problems with school that I do, and that I could have more of a plan. I wish I could do that, but because I can’t, then I just do what I can.”

76. cbirt. org Evidence-Based Practices Student-Focused Planning Student Development (life skills instruction, career and vocational curricula) Interagency Collaboration Family Involvement (advocacy training and counselors) Program Structure (program policy and evaluation) www.NSTTAC.org

77. cbirt. org Not Validated for Students with TBI Of 131 studies examining effectiveness of these transition practices 6 involved students with TBI 10 participants out of a total of over 1500

78. cbirt. org TBI Transition Tool Kit Pilot study through MCH State Improvement Grant Developed and piloted in Central Oregon Evidence-based transition practices Adapted for students with TBI Training for TBI School Team members

79. cbirt. org Development and Training NIDRR Development Project: Defining Success IES Personnel Prep Development Grant with YTP Give transition professionals info about TBI and Transition Strategies Provide consultation, community of practice, resources

80. cbirt. org Todis B. & Glang, A. (2008). Redefining Success: Results of a qualitative study of post-secondary transition outcomes for youth with traumatic brain injury. Journal of Head Trauma Rehabilitation, 23(4), 252-263. Todis, B. Glang, A., Bullis, M., Ettel, D., & Hood, D. (2011). Longitudinal Investigation of the Post-High School Transition Experiences of Adolescents with Traumatic Brain Injury. Journal Head Trauma Rehabilitation, 26(2), 138-149.