1. cbirt. org We must be willing to get rid of the life we planned, so as to have the life that is waiting for us. Joseph Campbell

2. TRANSITION INTO ADULTHOOD FOR STUDENTS WITH TBI Bonnie Todis, Ph.D. Center on Brain Injury Research & Training

3. cbirt. org Our Questions: What are the transition experiences of students with TBI? 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?

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

5. POST-SECONDARY OUTCOMES PROJECT (PSO)

6. 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

7. 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

8. 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

9. 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

10. RESULTS

11. cbirt. org Life Transition Planning At initial interview

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

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

14. TRANSITION OUTCOMES

15. 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)

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

17. 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

18. cbirt. org Employment Outcomes by Gender

19. 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

20. 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

21. 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.

22. 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

23. 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

24. 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

25. 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

26. POST SECONDARY EDUCATION

27. 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 (%)

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

29. cbirt. org Comparison with Peers Non disabled young adults 18-25 46% enrollment (Pew 2007) 54% female (200?) NLTS2 45% reported continuing to postsecondary ed within 4 years of leaving high school. 32% community colleges 23% vocational/tech 14% 4-year

30. 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.

31. 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 (%)

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

33. 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).

34. 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.

35. Qualitative Component

36. 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

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

38. cbirt. org Selection of Respondents Selective sampling for factors of interest Resilience factors Family support Access to/use of agency supports Community/social support Range of high school experiences, severity, age at injury, disabilities, SES, urban/rural

39. Qualitative Findings

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

41. High School Experiences

42. cbirt. org Themes: High School Services Students not identified for special education: Tested at or above grade level (didnt qualify) Injured junior or senior year, helped to graduate on time

43. cbirt. org Helped to Graduate: Academic My mom worked at the school and all the teachers loved me, so I didnt 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 dont think it was that great for going to [college], but yes, because I dont think I wouldve graduated. ~Kristi

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

45. cbirt. org High School Services Students identified for special education: Not identified TBI Two-track system Rarely received good transition services

46. cbirt. org Not identified TBI All of the transition services I got were through the school for the deaf, because I had a hearing impairment before the TBI. So one summer I went to camp there, and I got some cooking lessons. That was it. ~Tanya

47. 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

48. cbirt. org Identification Issues Because he presents well and isnt a behavior problem, everybody thought I was nuts when I asked for so much support. But then at the very end of the year, a teacher called me, furious because Mike belonged in a special class. Every year I would tell staff this. Theyd say, Ok, ok. and then mid-year, Your kids got problems! Then they would spend the last half of the year trying to get something in place, when hes already missed the first half. ~Mikes mom

49. cbirt. org Identified for SpEd: Academic He has these gaps. He can do math that he learned before the TBI, but Im not sure hes really learned anything since the injury, because his teachers dont know how to deal with his learning problems. ~Jeds mother

50. cbirt. org Identified for SpEd: Academic I graduated with a B average. I cant really read or write, though. ~Jed

51. 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

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

53. 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

54. cbirt. org Two Track System: Life Skills The teachers in my life skills program keep forgetting that I havent been this way my whole life. And I remember when I wasnt this way. I cant talk very well. I cant walk very well. But Im still smart. I know a heck of a lot…More than I should! ~Mary, injured age 9

55. cbirt. org Actual Transition Services Hes in one of the best life skills programs in the state. I mean, they have everything. But hes been in it for 4 years now, and every year they have to redo bus training, and hes still not safe on the bus independently. Hes got a job at a grocery store for work experience, and he loves it, but theres no indication the store will hire him for real when hes 22. ~Mikes mom

56. POST SECONDARY EDUCATION

57. 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

58. cbirt. org Tina Before the accident, [my friend April and I] basically had the same life. We were suppose to go away to UO together and be roommates, but because of the accident, I stayed home that year

59. cbirt. org Tina When she did go to the university the next year, she still, I think, maturity-wise, was probably like at about the level of a 15-year old. Everything was really compulsive. She gained weight because of stress. Drank too much, even though she knew she shouldnt drink at all. She would drink a lot and just pass out. I never wanted to take her to parties. ~Tinas friend April

60. cbirt. org Tina She lived with a total stranger in the dorm who didnt know she had a car accident until after Christmas break. Tina chose not to tell her. I will say, the girls robbed her blind. Tina would think her leather coat was at home, then notice that her roommate was wearing one exactly like it. She didnt figure out until much later that it was her coat. ~Tinas mother

61. cbirt. org Tina Id be like Oh just come on! Lets go out and do something. And shed be like, I have to study. And she did. I mean she studied relentlessly, and then shed wake up the next morning and couldnt remember what she studied. She couldnt pass any classes. I dont even know if she even got a credit. She might have gotten like a couple seminar credits, but I don think she passed a class. ~April

62. cbirt. org Themes: Is it worth it? Will I be able to perform the job I am preparing for? I cant sit here in my parents house forever until I pick out the perfect career. I have to go try. ~Jack

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

64. cbirt. org Critical Features of Sams Story Parent advocacy Achievable short term goals Manageable environments On-going support

65. Employment

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

67. cbirt. org Chelsea History of quitting jobs if under pressure Receptionist job at community center Boss remembered the article in the paper Part time, no benefits, minimum wage Accommodations: schedule to work when office less busy task list, plan with boss before shift

68. cbirt. org Chelsea Shell do a good job for you. I always left instruction about what she was supposed to do. She would ask a lot of questions, and she was frustrating for the people who worked with her. But once you give her the guidance, shell do exactly what you need her to do without a doubt. She may sometimes do it wrong the first time, but shell try to do it right. ~Chelseas boss

69. cbirt. org Chelsea Problems at work: Easily confused and over-whelmed Talked too loud Called bosss pager with trivial questions PDAs with boyfriend in the office Lost her job when she couldnt get time off for a weddingwent anyway.

70. cbirt. org Chelsea At the end of the study working a few hours a week cleaning a friends house $7 per hour Cost $5-$6 for transportation/child care Selling belongings on Ebay

71. cbirt. org Chelsea If I dont work full time, I cant make enough money. If I get a full time job, it has to be something I know how to do or Ill get overwhelmed. I get overwhelmed if I have to multi-task. And I need a break every 10-15 minutes. I get panic attacks, and I get sick a lot. My daughter gets sick a lot, too.

72. cbirt. org Chelsea Work must be structured and routine, but the risk is she will be bored, further eroding her self-confidence and self- esteem. She need to pick the right supervisor. She needs structure and accommodations, but also challenge. ~Chelseas neuropsychologist

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

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

75. Community Integration

76. 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

77. cbirt. org Clay, Joe, Ted Section 8 apartments No cooking or house keeping skills Friends move in Social service personnel are critical of family Young adult is unsafe, unhealthy Family wants young adult out of the house

78. cbirt. org Disruption of the Empty Nest High rate of divorce following TBI Step parent wants the young adult [male] out Mom feels guilty Strain on the new marriage

79. cbirt. org Stability in Living Situation Family nearby (Sam, Al, Jed, Bethany) Spouse (Tom, Cody, Tanya, Jed) Living with family (Tina, Brittany, Jack) Supported living (Jenna, Tiger)

80. Promising Transition Practices

81. cbirt. org Promising Practices From young adults with TBI and families From transition research From TBI Team members

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

83. 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.

84. cbirt. org Strategies: Reframing Dont think of it as, Ive been working on a 2-year degree for 5 years. Think of it as doing something good for your brain, everyday.

85. 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 didnt 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 cant, then I just do what I can.

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

87. 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

88. cbirt. org Modifying E-B Practices E-B PracticeTBI ChallengeModifications Family Involvement Pursuing preinjury plan Parent/student grieving/unaware Student changing rapidly Assess skills/share info Research on TBI outcomes Adjust activities to changing goals/plans Provide hopewhat leads to good outcomes? Student-centered planning Lack of awareness Parents not ready to let go given recent dependence Memory impairments Executive function/planning Big One-shot meetings are over-whelming On-going conversation to adjust plans to awareness, changes Use PCP to teach planning, making decisions, realistic expectations Motivational Interviewing

89. cbirt. org E-B PracticeTBI ChallengeModification Self-AdvocacyStudent may not appear to have challenges Student may need help one day, not next May have language deficits, impulsivity, impaired judgment that affect communication May confabulate Lack of public awareness Provide frequent practice opportunities in many situations Train employers and co-workers re: TBI Use How Am I Doing? tool Learning in Context Problems with generalization Impaired judgment Initiation /impulsivity Memory/attn/organization Environmental and behavioral supports Train co-workers Include self- evaluation

90. cbirt. org Whats different for students with TBI? Relearning skills Dealing with personality changes Understanding how the recovering brain works Accurately assessing new abilities Monitoring awareness, behavior, responses of others, physical condition and limits

91. cbirt. org reflect on abilities, gain self awareness, self determination and self advocacy while evaluating their steps toward personal goals. Helps students who have memory challenges recall goals and the steps they need to perform. Explicit plans help:

92. cbirt. org Explicit Plans Help: Makes planning for the future more tangible and understandable. Highlights connection between actions and the outcome of those actions. (If you dont go to practice you cannot swim on the team and are less likely to get the swimming scholarship or a spot on the Olympic Swim Team). use of visual supports to enhances new learning and cognitive flexibilty 35.

93. cbirt. org Janell Janell, a junior with TBI wanted to attend college but wasnt exactly sure what courses she wanted to take. She was on track to get a standard diploma, but was unable to complete the course work in her most recent classes. Janell had a work experience placement in an office near her high school. She believed she was doing well in this placement and started planning to attend college with the goal of being a secretary. However, she was unaware that that her co-workers didnt think she had the potential to be a secretary and were providing a high level of support for her in her work experience as an office assistance.

94. cbirt. org On the jobHow am I doing with Problem Solving? Given a job tryout, Jennell will offer possible solutions to everyday problems as they arise over the course of her day. She will rate herself as a (1) 90% of the time over 2 consecutive weeks with inter-rating agreement from supervisor, colleague or teacherthis goal would not appear on the form as written in the IEP. Keep wording student friendly and student driven. Jenell 1 no help/solution worked 2 encouraged to solve the problem/solution worked 3 someone gave me solutions to choose from/solution worked My thoughts Monday Tuesday Wednesday Thursday Friday Supervisor 1 no help/solution worked 2 encouraged to solve the problem/solution worked 3 someone gave me solutions to choose from/solution worked My thoughts Monday Tuesday Wednesday Thursday Friday Colleague 1 no help/solution worked 2 encouraged to solve the problem/solution worked 3 someone gave me solutions to choose from/solution worked My thoughts Monday Tuesday Wednesday Thursday Friday

95. cbirt. org Development and Training B.R.A.I.N. Program julie.krupa@choa.org Adolescent Executive Functions-Lyn Turkstra College Students with TBI: Mary Kennedy NIDRR Development Project: Defining Success

96. cbirt. org Transition Web Project

97. 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.

98. cbirt. org Contact me Bonnie Todis, PhD Center on Brain Injury Research and Training Teaching Research Institute Western Oregon University www.cbirt.org todisb@cbirt.org