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School to community: Using evidence to improve hospital-school transition for children with TBI. Ann Glang, Ph.D. Center on Brain Injury Research and Training cbirt.org. Outline. Summary of issues in educating children with TBI Student Transition Re-Entry Program

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school to community using evidence to improve hospital school transition for children with tbi

School to community:Using evidence to improve hospital-school transition for children with TBI

Ann Glang, Ph.D.

Center on Brain Injury Research and Training

cbirt.org

outline
Outline

Summary of issues in educating children with TBI

Student Transition Re-Entry Program

Preliminary findings from multi-site study

partners
Partners
  • Cincinnati Children’s Hospital Medical Center
  • Nationwide Children’s Hospital
  • Rainbow Babies & Children’s Hospital
  • MetroHealth, Cleveland
  • The Children’s Hospital, Denver
  • Legacy Emanual Hospital, Portland  
  • Center on Brain Injury Research and Training
  • Colorado Department of Education
  • Ohio Department of Education
  • Oregon Department of Education
challenges

CHALLENGES

WHY ARE CHILDREN WITH TBI DIFFICULT TO SERVE?

challenge
Challenge

Parents often believe that rapid pace of early recovery will continue

Parent and educator expectations may not match

parent expectations
Parent Expectations

I think parents can be the biggest obstacle to good transition back to school. They’re dealing with denial, grieving, avoidance. When I call parents at home to follow up after the kid is back at school, I often hear, “They’re fine, they’re fine, everything’s fine.”

~Ohio parent advocate

parent experience
Often new to the special education system

Under tremendous stress (emotional, physical, financial)

Parent Experience
challenge1
CHALLENGE
  • Often parent-professional relationship becomes adversarial
    • Different expectations
    • High stress
student characteristics
Student Characteristics
  • Inconsistent learning profiles
  • Initial improvement can be dramatic
  • Effects of TBI are subtle and confusing
  • Heterogeneity of disability
forgotten injuries
“Forgotten” Injuries
  • Child injured at an early age – impact not seen until years later
slide12
Two days before her first birthday she was in a head on collision. We didn't realize anything was wrong until she started kindergarten and had a horrible time concentrating and learning. . .

~Kansas parent

unique disability
Unique Disability
  • TBI is an “invisible disability”
  • Students may have no physical signs of disability
invisibility
Invisibility
  • I need to be careful how I say this…
  • It’s almost like it would’ve been better if the injury were severe enough that we would’ve had to have gotten help. With TBI, the moderate to mild…it’s invisible. People don’t see it and then people don’t get the help that they need.
  • ~Parent
poor awareness of tbi in schools
Poor Awareness of TBI in Schools
  • Preservice training in ABI is lacking
  • Inservice training is often ineffective
educator training in tbi
Educator Training in TBI
  • Survey of educators in Pacific Northwest
  • Sample: Teachers who were currently working with students with TBI
  • N = 65
communication breakdown
Communication Breakdown
  • There is no systematic method for connecting children and their families with services within the school and community following TBI.
back to school study us department of education grant h324c010113
Back to School Study(US Department of Education, Grant # H324C010113)
  • Purpose: Document hospital-school transition experience of children with TBI
  • N = 56
  • Inclusion criteria: 24 hour hospitalization
  • 76% of children had severe TBI

Glang, Todis, Thomas et al., 2008

back to school study findings
Back to School Study Findings

Key factors related to provision of formal special education or 504 services:

  • injury severity
  • hospital-school transition services
challenges1
Challenges
  • Students with TBI are unique
  • There is a lack of understanding of TBI
  • Parents and educators have different perspectives
  • There is no systematic method for connecting hospital and school
addressing the challenges
Addressing the challenges
  • Less is more: Identifying one area for intervention
  • Hospital-school transition: Biggest bang for the buck
step student transition and reentry program model

STEP: Student Transition and reEntry Program model

Improving the link between hospital and school

step model
STEP model
  • Grounded in experience of families and of hospital and school personnel in five states
    • Focus groups with hospital rehabilitation personnel, administrators, social workers
    • Interviews and observations with parents, teachers, school administrators, support personnel
step student transition and re entry model
STEP (Student Transition and re-Entry) model
  • State Department of Education (DOE) provides a single point of contact for all hospitals to call
  • DOE informs trained regional liaison
  • Regional liaison
    • informs the school
    • offers resources to family and school
step ongoing support
STEP ongoing support
  • School staff access training and support as needed
  • Parents can contact the liaison at any time
  • Progress of students is tracked by DOE annually
slide28
R8

R1

R6

R2

R5

R7

R4

R3

key elements of step
Key elements of STEP
  • Facilitates Special Education identification of students with TBI—especially those not discharged from rehabilitation
  • Provides user-friendly resources to families and schools
  • Tracks kids through school so TBI is not “forgotten”
step evaluation
STEP Evaluation
  • Randomized controlled trial
  • Sites in Ohio, Colorado, Oregon
    • 5 hospitals, 3 Depts. Of Education
sample
Sample
  • Current total N = 136 (ages 5 – 20)
  • Preliminary analysis: Subset n = 70, data collected so far
  • Children/youth ages 5-19 who:
    • Are enrolled in school
    • Were hospitalized at least overnight for TBI
study design rct
Study Design: RCT
  • Student assigned to STEP or usual care
  • Parent and 1-2 teachers complete baseline measures
  • Reassessment at one year
  • T0 in hospital, T1 at 30 days post-injury, T2 at 1 year post-injury
parent measures
Parent Measures
  • State/Trait Anxiety Index
  • Brain Injury Partners measures of advocacy skill
  • Child Behavior Checklist (CBCL, aka Achenbach)
  • CASP – Child & Adolescent Scale of Participation
  • CASE – Child & Adolescent Scale of Environment
  • Brief BRIEF (24 questions)
  • STEP measures of parent concerns/services needed/provided/satisfaction
teacher measures
Teacher Measures
  • Demographics-including experience/training
  • Teacher Knowledge
  • STEP measures of teacher concerns/services needed/provided/satisfaction
  • BRIEF (full)
  • CBCL
  • SSBS – School Social Behavior Scales (Scale A)
preliminary findings
Preliminary Findings
  • Measures (reported here)
    • Parent survey
    • School records
sample age at injury
Sample: Age at Injury
  • Mean age: 14.11 years (SD =3.81 yrs)
  • Range: 5.0 - 20 years

Note: Analysis results for subset of total sample collected so far, n = 70

severity of injury
Severity of Injury

Frequency Count N = 70

student grade
Student Grade

Frequency count N = 70

received inpatient rehabilitation services
Received inpatient rehabilitation services?

Percent of total sample N = 136

special education services
Special Education Services

Percent of total sample of students post-injury who have IEP N = 136

does step make a difference
Does STEP make a difference?

When they returned to school, children/youth who received inpatient rehabilitation received similar school services across treatment condition

results by tx condition
Results by TX Condition
  • No statistically significant differences between outcomes for STEP vs. Usual Care
control for rehabilitation services status

Control for rehabilitation services status

Does the effect of STEP depend upon whether or not the student had rehabilitation services?

treatment effects controlling for rehabilitation services status
Treatment effects controlling for rehabilitation services status

Procedures:

  • Sample divided by Rehab (28) vs. No Rehab (42) for n = 70 subset
  • Each group contained tx & control
slide48
STEP children/youth who did not receive rehabilitation received more types of support service than did students in usual care

Types of services: Academic, Speech-Language, Vision, Social-Behavioral, Physical, Medical, and Transition

big picture
Big Picture

For children/youth who did not receive rehabilitation, those in STEP showed better results compared with Usual Care:

more likely to be found eligibility for special education under the TBI category

parents report school staff more helpful

parents express more satisfaction with school services

what does it mean
What does it mean?

Promising initial results suggest that for students who do not receive rehabilitation, STEP can help.

Students who get STEP support are more likely to get connected with appropriate services

next steps on step
Next Steps on STEP
  • Continue data analyses
    • Teacher measures
    • One-year student outcome measures
  • One-year follow-up study
    • Funded by OH Emergency Medical Services (Dr. Keith Yeates lead investigator)
next steps on step1
Next Steps on STEP
  • Work with states to implement
  • Fidelity is important:
    • Using part of the recipe for success may not lead to the same outcomes
step key components
STEP: Key components
  • Coordinator at state/regional Department of Education
  • Regional liaisons
  • Coordinator at hospital
join the conversation

Join the Conversation

news and research related to TBI, upcoming events, and new resources!

contact me
Contact me

Ann Glang, PhD

Center on Brain Injury Research and Training

Teaching Research Institute

Western Oregon University

www.cbirt.org

[email protected]

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