Cbirt. org We must be willing to get rid of the life we planned, so as to have the life that is...

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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

TRANSITION INTO ADULTHOOD FOR STUDENTS WITH

TBI

Bonnie Todis, Ph.D.Center on Brain Injury Research & Training

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?

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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

POST-SECONDARY OUTCOMES

PROJECT(PSO)

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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

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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

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Project PSO

Purpose: Systematic tracking of quantitative data

on transition outcomes Methodology: In-person/phone interviews with young

adult, parent 6-12-month intervals

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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

RESULTS

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Life Transition Planning

50%

48%

2%

Chart Title

No Yes Don't know

At initial interview

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Written Transition Plan

36%

61%

2%Chart Title

Yes No Don't know

At initial interviewBonnie Todis, Ph.D.Center on Brain Injury Research and Training

cbirt.org

Person Who Helped Plan Transition

Don't know

Other

Voc. Rehab

Community Trans Program

School Staff

Family member

0 5 10 15 20 25

Count

At initial interview

TRANSITION OUTCOMES

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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) 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)

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Post-Secondary Employment Outcomes 19-25

Age in Years0

10

20

30

40

50

60

70

19 20 21 22 23 24 25

Perc

en

t Em

plo

yed

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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

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Employment Outcomes by Gender

19 20 21 22 23 24 250

10

20

30

40

50

60

70

80

MalesFemales

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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

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Comparison with Typical Peers

EMPLOYMENT RATE

WAGESPER 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/unskilled19%management/pro

• Bureau of Labor Statistics of the U.S. Department of Labor, January 19, 2007

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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.

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Factors That Impact Employment

1.00

2.00

3.00

4.00

5.00

Ty

pe

of

wo

rk c

ate

go

ry h

igh

=p

rofe

ss

ion

al

Work category by time sex age at injury

0 1.00 2.00 3.00 4.00

TIME

SEX = 0,AGEINJ3 = -5.985

SEX = 0,AGEINJ3 = 2.897

SEX = 0,AGEINJ3 = 5.119

SEX = 1,AGEINJ3 = -5.985

SEX = 1,AGEINJ3 = 2.897

SEX = 1,AGEINJ3 = 5.119

Later age)

Earlier age

Later age

Earlier age

Bonnie Todis, Ph.D.Center on Brain Injury Research and Training

Avg age

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

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5.94

7.20

8.46

9.72

10.98

Wa

ge

s

Wages over time by age at injury and severity

1.00 3.50 6.00 8.50 11.00

Time

AGEINJ3 = -5.985,SEVERE = 0


AGEINJ3 = 5.119,SEVERE = 0




Early injury

Later injury

Wages Over Time by Age at Injury and Severity

Later injury

Severe

Mild/Moderate

Early injury

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0.00 1.001.72

2.32

2.91

3.50

4.09

SEVERE

Q2

A9

A1

hours worked per week

SEX = 0,AGEINJ3 = -5.985

SEX = 0,AGEINJ3 = 2.560

SEX = 0,AGEINJ3 = 5.119

SEX = 1,AGEINJ3 = -5.985

SEX = 1,AGEINJ3 = 2.560

SEX = 1,AGEINJ3 = 5.119



Severity

Hours Worked per WeekIn

jure

d ea

rlier

late

r

Severity: M/M work > # Hrs.

Gender: Males> #hrs.

For both genders: Earlier age at injury = work fewer hours/week

Females

Males

Females

Males

Inju

red

earli

erla

ter

SevereMild/Mod

21 – 30hr

11-15hr

Hou

rs P

er W

eek

16-20hr

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-8.00 -6.00 -4.00 -2.00 02.80

2.98

3.17

3.35

3.54

time

ho

w h

ap

py

are

yo

u








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

POST SECONDARY EDUCATION

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Post-SecondaryEducation OutcomesAges 19-25

Age 19(n = 54)

20(n = 74)

21(n = 85)

22(n = 86)

23(n = 84)

24(n = 75)

25(n = 55)

Education 15 (28) 26 (35) 34 (40) 22 (26) 26 (31) 18 (24) 14 (25)

Male 7 (19) 17 (36) 20 (35) 11 (19) 15 (27) 7 (15) 6 (17)

Female 8 (47) 9 (33) 14 (50) 11 (39) 11 (39) 11 (41) 8 (40)

n (%)

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Post-Secondary Education Outcomes Ages 19-25

Nondisabled

PSO Sample

0

20

40

60

Chart Title

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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

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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.

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Independent Living Outcomes Ages 19-25

Bo

nn

ie To

dis, P

h.D

.C

en

ter o

n B

rain

Inju

ry Re

sea

rch a

nd

T

rain

ingAge

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)

Male 7 (20) 13 (28) 18 (33) 22 (39) 22 (39) 24 (49) 20 (57)

Female 5 (29) 13 (48) 10 (37) 15 (54) 13 (45) 13 (48) 9 (45)

n (%)

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Age in Years0

10

20

30

40

50

60

19 20 21 22 23 24 25

Perc

en

t En

rolled

Post-SecondaryIndependent Living OutcomesAges 19-25

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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).

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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.

Qualitative Component

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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

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Qualitative Methodology

Methodology: Unstructured recursive interviews Participant observations with young

adult Interviews with knowledgeable others

1-to-6-month intervals

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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

Qualitative Findings

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Thematic Categories

High School Experiences Employment Post-Secondary Education Community Integration

High School Experiences

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Themes: High School Services

Students not identified for special education: Tested at or above grade level (didn’t

qualify) Injured junior or senior year, “helped” to

graduate on time

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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

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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

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High School Services

Students identified for special education: Not identified TBI Two-track system Rarely received good transition services

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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

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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

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Identification Issues

Because he presents well and isn’t 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. They’d say, “Ok, ok.” and then mid-year, “Your kid’s got problems!” Then they would spend the last half of the year trying to get something in place, when he’s already missed the first half.

~Mike’s mom

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Identified for SpEd: Academic

He has these gaps. He can do math that he learned before the TBI, but I’m not sure he’s really learned anything since the injury, because his teachers don’t know how to deal with his learning problems.

~Jed’s mother

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Identified for SpEd: Academic

“I graduated with a B average. I can’t really read or write, though.”

~Jed

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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

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What kids needNTLS2: Needs Life Skills

%

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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

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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

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Actual Transition Services

He’s in one of the best life skills programs in the state. I mean, they have everything. But he’s been in it for 4 years now, and every year they have to redo bus training, and he’s still not safe on the bus independently. He’s got a job at a grocery store for work experience, and he loves it, but there’s no indication the store will hire him for real when he’s 22.

~Mike’s mom

POST SECONDARY EDUCATION

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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

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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

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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 shouldn’t drink at all. She would drink a lot and just pass out. I never wanted to take her to parties.

~Tina’s friend April

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Tina

She lived with a total stranger in the dorm who didn’t 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 didn’t figure out until much later that it was her coat.

~Tina’s mother

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Tina

I’d be like ‘Oh just come on! Let’s go out and do something.’ And she’d be like, ‘I have to study.’ And she did. I mean she studied relentlessly, and then she’d wake up the next morning and couldn’t remember what she studied. She couldn’t pass any classes. I don’t 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

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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

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Strategies and Supports

Some participants modified their plans Some developed effective strategies Some accessed effective supports

SAM’S STORY

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Critical Features of Sam’s Story

Parent advocacy Achievable short term goals Manageable environments On-going support

Employment

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Employment Themes

Got job through Life Skills Family connections

Infrequent promotion Frequent job changes/unemployment

Uneven performance Inappropriate behavior Impulsivity/poor judgment

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Chelsea

History of quitting jobs if under pressureReceptionist job at community centerBoss remembered the article in the paperPart time, no benefits, minimum wageAccommodations:

schedule to work when office less busytask list, plan with boss before shift

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Chelsea

She’ll 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, she’ll do exactly what you need her to do without a doubt. She may sometimes do it wrong the first time, but she’ll try to do it right. ~Chelsea’s boss

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Chelsea

Problems at work:Easily confused and over-whelmedTalked too loudCalled boss’s pager with trivial questionsPDAs with boyfriend in the officeLost her job when she couldn’t get time off

for a wedding—went anyway.

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Chelsea

At the end of the studyworking a few hours a week cleaning a friend’s house$7 per hour Cost $5-$6 for transportation/child careSelling belongings on Ebay

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Chelsea

If I don’t work full time, I can’t make enough money. If I get a full time job, it has to be something I know how to do or I’ll 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.

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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.

~Chelsea’s neuropsychologist

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Employment Successes

Al: stable cleaning business

Jed: tire store

Jay: team trainer

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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

Community Integration

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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

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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

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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

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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)

Promising TransitionPractices

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Promising Practices

From young adults with TBI and families From transition research From TBI Team members

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Strategies

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

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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.”

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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.”

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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.”

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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

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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

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Modifying E-B PracticesE-B Practice TBI Challenge Modifications

Family Involvement

Pursuing preinjury planParent/student grieving/unawareStudent changing rapidly

Assess skills/share infoResearch on TBI outcomesAdjust activities to changing goals/plansProvide hope—what leads to good outcomes?

Student-centered planning

Lack of awarenessParents not ready to let go given recent dependenceMemory impairmentsExecutive function/planning Big One-shot meetings are over-whelming

On-going conversation to adjust plans to awareness, changesUse PCP to teach planning, making decisions, realistic expectationsMotivational Interviewing

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E-B Practice TBI Challenge Modification

Self-Advocacy Student may not appear to have challengesStudent may need help one day, not nextMay have language deficits, impulsivity, impaired judgment that affect communication May confabulateLack of public awareness

Provide frequent practice opportunities in many situationsTrain employers and co-workers re: TBIUse “How Am I Doing? tool

Learning in Context

Problems with generalizationImpaired judgmentInitiation /impulsivityMemory/attn/organization

Environmental and behavioral supportsTrain co-workersInclude self-evaluation

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What’s different for students with TBI?

Relearning skills Dealing with personality changes Understanding how the recovering brain worksAccurately assessing new abilitiesMonitoring awareness, behavior, responses of others, physical condition and limits

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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:

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Explicit Plans Help:

Makes planning for the future more tangible and understandable.

Highlights connection between actions and the outcome of those actions. (If you don’t 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 flexibilty35.

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Janell

Janell, a junior with TBI wanted to attend college but wasn’t 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 didn’t 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.

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On the job—How 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 teacher—this goal would not appear on the form as written in the IEP. Keep wording student friendly and student driven.

Jenell

1no help/solution

worked

2encouraged to solve the

problem/solution worked

3someone gave me solutions

to choose from/solution worked

My thoughts

Monday

Tuesday

Wednesday

Thursday

Friday

Supervisor

1no help/solution

worked





My thoughts

Monday

Tuesday

Wednesday

Thursday

Friday

Colleague

1no help/solution

worked





My thoughts

Monday

Tuesday

Wednesday

ThursdayFriday

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Development and Training

B.R.A.I.N. Program [email protected] Adolescent Executive Functions-Lyn

Turkstra College Students with TBI: Mary

Kennedy NIDRR Development Project: Defining

Success

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Transition Web Project

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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.

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Contact me

Bonnie Todis, PhDCenter on Brain Injury Research and

TrainingTeaching Research InstituteWestern Oregon [email protected]

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