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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. Our Questions:.

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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

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

TRANSITION INTO ADULTHOOD FOR STUDENTS WITH TBI to have the life that is waiting for us.

Bonnie Todis, Ph.D.

Center on Brain Injury Research & Training


Our questions
Our Questions: to have the life that is waiting for us.

  • 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?


Transition services idea
Transition Services IDEA to have the life that is waiting for us.

  • 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
POST-SECONDARY OUTCOMES to have the life that is waiting for us.PROJECT(PSO)


Project pso
Project PSO to have the life that is waiting for us.

  • 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


Pso participants
PSO Participants to have the life that is waiting for us.

  • 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


Project pso1
Project PSO to have the life that is waiting for us.

Purpose:

  • Systematic tracking of quantitative data on transition outcomes

    Methodology:

  • In-person/phone interviews with young adult, parent

  • 6-12-month intervals


Pso survey domains
PSO Survey Domains to have the life that is waiting for us.

  • 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
RESULTS to have the life that is waiting for us.


Life transition planning
Life Transition Planning to have the life that is waiting for us.

At initial interview


Written transition plan
Written Transition Plan to have the life that is waiting for us.

At initial interview

Bonnie Todis, Ph.D.

Center on Brain Injury Research and Training


Person who helped plan transition
Person Who Helped Plan Transition to have the life that is waiting for us.

At initial interview


Transition outcomes
TRANSITION OUTCOMES to have the life that is waiting for us.


Employment outcomes ages 19 25
Employment Outcomes Ages 19-25 to have the life that is waiting for us.


Post secondary employment outcomes 19 25
Post-Secondary Employment Outcomes 19-25 to have the life that is waiting for us.


Closer look employment at age 25
Closer Look: to have the life that is waiting for us.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


Employment outcomes by gender
Employment Outcomes by Gender to have the life that is waiting for us.


Employment at age 25
Employment at Age 25 to have the life that is waiting for us.

  • 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


Comparison with typical peers
Comparison with Typical Peers to have the life that is waiting for us.

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


Factors predicting employment
Factors Predicting Employment to have the life that is waiting for us.

  • 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.


Factors that impact employment
Factors That Impact Employment to have the life that is waiting for us.

Work Category by Sex and Age at Injury Over Time

Job Category by Sex and Age at Injury

Clerical, sales

Later age)

Skilled manual labor

Earlier age

Avg age

Females

Later age

Semi-skilled

Earlier age

Avg age

Males

Unskilled work

Menial service

Bonnie Todis, Ph.D.

Center on Brain Injury Research and Training


Factors that impact employment1
Factors That Impact Employment to have the life that is waiting for us.

Wages Over Time by Age at Injury and Severity

Later injury

Severe

Mild/Moderate

Early injury

Later injury

Bonnie Todis, Ph.D.

Center on Brain Injury Research and Training

Early injury


Factors that impact employment2
Factors That Impact Employment to have the life that is waiting for us.

Hours Worked per Week

Severity: M/M work > # Hrs.

Gender: Males> #hrs.

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

21 – 30hr

later

Bonnie Todis, Ph.D.

Center on Brain Injury Research and Training

later

Hours Per Week

16-20hr

Injured earlier

Injured earlier

Males

Males

Females

11-15hr

Females

Mild/Mod

Severe

Severity


Factors that impact employment3
Factors That Impact Employment to have the life that is waiting for us.

Job Happiness by Severity and Age at Injury

Very Happy

Early age

Severe

Avgage

Later age

Happy

Early age

Mild/

Moderate

Avgage

Later age

Unhappy


Post secondary education
POST SECONDARY EDUCATION to have the life that is waiting for us.


Post secondary education outcomes ages 19 25
Post-Secondary to have the life that is waiting for us.Education OutcomesAges 19-25

n (%)


Post secondary education outcomes ages 19 251
Post-Secondary Education Outcomes to have the life that is waiting for us.Ages 19-25


Comparison with peers
Comparison with Peers to have the life that is waiting for us.

  • 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


Factors that affect enrollment
Factors That Affect Enrollment to have the life that is waiting for us.

  • 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.


Independent living outcomes ages 19 25
Independent Living Outcomes to have the life that is waiting for us.Ages 19-25

Bonnie Todis, Ph.D.

Center on Brain Injury Research and Training

n (%)


Post-Secondary to have the life that is waiting for us.Independent Living OutcomesAges 19-25


Comparison with peers1
Comparison with Peers to have the life that is waiting for us.

  • 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).


Factors that affect ind living
Factors That Affect Ind. Living to have the life that is waiting for us.

  • 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
Qualitative to have the life that is waiting for us.Component


Qualitative component1
Qualitative Component to have the life that is waiting for us.

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


Qualitative methodology
Qualitative Methodology to have the life that is waiting for us.

Methodology:

  • Unstructured recursive interviews

  • Participant observations with young adult

  • Interviews with knowledgeable others

    1-to-6-month intervals


Selection of respondents
Selection of Respondents to have the life that is waiting for us.

  • 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
Qualitative to have the life that is waiting for us.Findings


Thematic categories
Thematic Categories to have the life that is waiting for us.

  • High School Experiences

  • Employment

  • Post-Secondary Education

  • Community Integration


High school experiences
High School to have the life that is waiting for us.Experiences


Themes high school services
Themes: High School Services to have the life that is waiting for us.

  • 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


Helped to graduate academic
Helped to Graduate: Academic to have the life that is waiting for us.

“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


Themes not identified for sped
Themes: Not identified for SpEd to have the life that is waiting for us.

  • No transition services

    • No IEP

    • Graduated

  • No access to disability services post-graduation

  • Usually tried to follow pre-injury plan


High school services
High School Services to have the life that is waiting for us.

  • Students identified for special education:

    • Not identified TBI

    • Two-track system

    • Rarely received good transition services


Not identified tbi
Not identified TBI to have the life that is waiting for us.

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


Themes two track system
Themes: Two-track System to have the life that is waiting for us.

College Prep

  • Focus on graduation requirements

  • Learning problems not like those of LD

  • Often need social and life skills training

  • Minimal transition services


Identification issues
Identification Issues to have the life that is waiting for us.

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


Identified for sped academic
Identified for SpEd: Academic to have the life that is waiting for us.

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


Identified for sped academic1
Identified for SpEd: Academic to have the life that is waiting for us.

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

~Jed


Two track system academic
Two-track System: Academic to have the life that is waiting for us.

  • Typical transition plan activities:

    • Write a resume

    • Take an aptitude test

    • College visitation and meeting with disability services coordinator

    • No time for life skills


What kids need ntls2 needs life skills
What kids need to have the life that is waiting for us.NTLS2: Needs Life Skills

%


Two track system life skills
Two-track System: Life Skills to have the life that is waiting for us.

  • 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


Two track system life skills1
Two Track System: Life Skills to have the life that is waiting for us.

“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


Actual transition services
Actual Transition Services to have the life that is waiting for us.

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 education1
POST SECONDARY EDUCATION to have the life that is waiting for us.


Themes pre injury plans
Themes: Pre-injury Plans to have the life that is waiting for us.

  • 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


Tina to have the life that is waiting for us.

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


Tina to have the life that is waiting for us.

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


Tina to have the life that is waiting for us.

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


Tina to have the life that is waiting for us.

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


Themes is it worth it
Themes: Is it worth it? to have the life that is waiting for us.

“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


Strategies and supports
Strategies and Supports to have the life that is waiting for us.

  • Some participants modified their plans

  • Some developed effective strategies

  • Some accessed effective supports

    SAM’S STORY


Critical features of sam s story
Critical Features of Sam’s Story to have the life that is waiting for us.

  • Parent advocacy

  • Achievable short term goals

  • Manageable environments

  • On-going support


Employment
Employment to have the life that is waiting for us.


Employment themes
Employment Themes to have the life that is waiting for us.

  • Got job through

    • Life Skills

    • Family connections

  • Infrequent promotion

  • Frequent job changes/unemployment

    • Uneven performance

    • Inappropriate behavior

    • Impulsivity/poor judgment


Chelsea
Chelsea to have the life that is waiting for us.

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


Chelsea1
Chelsea to have the life that is waiting for us.

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


Chelsea2
Chelsea to have the life that is waiting for us.

Problems at work:

Easily confused and over-whelmed

Talked too loud

Called boss’s pager with trivial questions

PDAs with boyfriend in the office

Lost her job when she couldn’t get time off for a wedding—went anyway.


Chelsea3
Chelsea to have the life that is waiting for us.

At the end of the study

working a few hours a week cleaning a friend’s house

$7 per hour

Cost $5-$6 for transportation/child care

Selling belongings on Ebay


Chelsea4
Chelsea to have the life that is waiting for us.

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.


Chelsea5
Chelsea to have the life that is waiting for us.

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


Employment successes
Employment Successes to have the life that is waiting for us.

  • Al: stable cleaning business

  • Jed: tire store

  • Jay: team trainer


Critical features of success
Critical Features of Success to have the life that is waiting for us.

  • Parent advocacy

  • Life skills training (work experience, social skills, money management)

  • Communication with and training for employer

  • On-going family support


Community integration
Community to have the life that is waiting for us.Integration


Community based services
Community Based Services to have the life that is waiting for us.

Pressure on families to access services when they are offered

Whether the young adult can benefit or not

Example: Section 8 Housing


Clay joe ted
Clay, Joe, Ted to have the life that is waiting for us.

  • 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


Disruption of the empty nest
Disruption of the Empty Nest to have the life that is waiting for us.

  • High rate of divorce following TBI

  • Step parent wants the young adult [male] out

  • Mom feels guilty

  • Strain on the new marriage


Stability in living situation
Stability in Living Situation to have the life that is waiting for us.

  • Family nearby (Sam, Al, Jed, Bethany)

  • Spouse (Tom, Cody, Tanya, Jed)

  • Living with family (Tina, Brittany, Jack)

  • Supported living (Jenna, Tiger)


Promising transition practices
Promising to have the life that is waiting for us.TransitionPractices


Promising practices
Promising Practices to have the life that is waiting for us.

  • From young adults with TBI and families

  • From transition research

  • From TBI Team members


Strategies
Strategies to have the life that is waiting for us.

  • Community College vs. 4-year college

  • Modify timeline

  • Access supports

  • Reframe challenges as opportunities

  • Live the life you have now


Strategies acceptance
Strategies: Acceptance to have the life that is waiting for us.

“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.”


Strategies reframing
Strategies: Reframing to have the life that is waiting for us.

“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.”


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.”

Strategies: Manageable Goals


Evidence based practices
Evidence-Based Practices 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.”

  • 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


Not validated for students with tbi
Not Validated for Students with TBI 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.”

  • Of 131 studies examining effectiveness of these transition practices

  • 6 involved students with TBI

  • 10 participants out of a total of over 1500


Modifying e b practices
Modifying E-B Practices 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.”


What s different for students with tbi
What’s different for students with TBI? 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.”

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


Explicit plans help
Explicit plans help: 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.”

  • 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 help1
Explicit Plans Help: 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.”

  • 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.


Janell
Janell 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.”

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.


Development and training
Development and Training 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.”

  • B.R.A.I.N. Program [email protected]

  • Adolescent Executive Functions-Lyn Turkstra

  • College Students with TBI: Mary Kennedy

  • NIDRR Development Project: Defining Success


Transition web project
Transition Web Project 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.”


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.


Contact me
Contact me a qualitative study of post-secondary transition outcomes for youth with traumatic brain injury.

Bonnie Todis, PhD

Center on Brain Injury Research and Training

Teaching Research Institute

Western Oregon University

www.cbirt.org

[email protected]


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