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

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Ann Glang, Ph.D.Center on Brain Injury Research and Training

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cbirt.orgOutlineSummary of issues in educating children with TBIStudent Transition Re-Entry ProgramPreliminary findings from multi-site study

cbirt.orgPartners

• 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

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CHALLENGES

WHY ARE CHILDREN WITH TBI WHY ARE CHILDREN WITH TBI DIFFICULT TO SERVE?DIFFICULT TO SERVE?

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Parents often believe that rapid pace of early recovery will continue

Parent and educator expectations may not match

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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 ExpectationsParent Expectations

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• Often new to the special education system

• Under tremendous stress (emotional, physical, financial)

Parent ExperienceParent Experience

cbirt.orgCHALLENGE

Often parent-professional relationship becomes adversarial Different expectationsHigh stress

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Unique Student Unique Student Characteristics Characteristics Unfamiliar to

educators

CHALLENGE

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Inconsistent learning profilesInitial improvement can be dramaticEffects of TBI are subtle and confusing

Heterogeneity of disability

Student CharacteristicsStudent Characteristics

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Child injured at an early age – impact not seen until years later

““Forgotten” InjuriesForgotten” Injuries

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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

cbirt.orgUnique Disability

TBI is an “invisible disability”

Students may have no physical signs of disability

cbirt.orgInvisibility

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

cbirt.orgPoor Awareness of TBI in SchoolsPreservice training in ABI is lacking

Inservice training is often ineffective

cbirt.orgEducator Training in TBI

Survey of educators in Pacific Northwest

Sample: Teachers who were currently working with students with TBI

N = 65

cbirt.orgHave you had training in acquired brain injury?

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“As educators, we don’t have a

handle on this disability”

~Oregon special education

administrator

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There is no systematic method for connecting children and their families with services within the school and community following TBI.

cbirt.orgBack to School Study(US Department of Education, Grant # H324C010113)

Purpose: Document hospital-school transition experience of children with TBI

N = 56Inclusion criteria: 24 hour hospitalization

76% of children had severe TBI

Glang, Todis, Thomas et al., 2008

cbirt.orgBack to School Study FindingsKey factors related to provision of formal special education or 504 services:

injury severity hospital-school transition services

cbirt.orgChallengesStudents with TBI are uniqueThere is a lack of understanding of TBI

Parents and educators have different perspectives

There is no systematic method for connecting hospital and school

cbirt.orgAddressing the challengesLess is more: Identifying one area for intervention

Hospital-school transition: Biggest bang for the buck

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Improving the link between hospital and

school

cbirt.orgSTEP model

Grounded in experience of families and of hospital and school personnel in five statesFocus groups with hospital rehabilitation personnel, administrators, social workers

Interviews and observations with parents, teachers, school administrators, support personnel

cbirt.org STEP (Student Transition and re-Entry)

modelState Department of Education (DOE) provides a single point of contact for all hospitals to call

DOE informs trained regional liaisonRegional liaison

informs the schooloffers resources to family and school

cbirt.orgSTEP 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

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R4

R3

R6 R1

R2

R7

R5

R8

cbirt.orgKey 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”

cbirt.orgSTEP Evaluation

Randomized controlled trialSites in Ohio, Colorado, Oregon5 hospitals, 3 Depts. Of Education

cbirt.orgSample

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 schoolWere hospitalized at least overnight for TBI

cbirt.orgStudy 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

cbirt.orgParent Measures

State/Trait Anxiety IndexBrain Injury Partners measures of advocacy skillChild Behavior Checklist (CBCL, aka Achenbach)CASP – Child & Adolescent Scale of ParticipationCASE – Child & Adolescent Scale of EnvironmentBrief BRIEF (24 questions)STEP measures of parent concerns/services needed/provided/satisfaction

cbirt.orgTeacher Measures

Demographics-including experience/trainingTeacher KnowledgeSTEP measures of teacher concerns/services needed/provided/satisfaction

BRIEF (full)CBCLSSBS – School Social Behavior Scales (Scale A)

cbirt.orgPreliminary Findings

Measures (reported here)Parent surveySchool records

cbirt.orgSample: 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

cbirt.orgSeverity of Injury

Frequency Count N = 70

cbirt.orgStudent Grade

Frequency count N = 70

cbirt.orgReceived inpatient rehabilitation services?

Percent of total sample N = 136

cbirt.orgSpecial Education Services

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

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Students receiving SpEd. Services n = 35, of sub-sample n = 70

cbirt.orgDoes STEP make a difference?When they returned to school, children/youth who received inpatient rehabilitation received similar school services across treatment condition

cbirt.orgResults by TX Condition

No statistically significant differences between outcomes for STEP vs. Usual Care

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Does the effect of STEP depend upon whether or not the

student had rehabilitation

services?

Control for rehabilitation services

status

cbirt.orgTreatment effects controlling for rehabilitation services statusProcedures:

Sample divided by Rehab (28) vs. No Rehab (42) for n = 70 subset

Each group contained tx & control

cbirt.org% Students (non-rehab) with IEP % Students (non-rehab) with IEP at Time 2at Time 2

N = 42 No Rehab

cbirt.org% Parent Overall % Parent Overall Satisfaction at Time 2Satisfaction at Time 2

N = 42No Rehab

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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

cbirt.orgBig PictureFor 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 categoryparents report school staff more helpful parents express more satisfaction with school services

cbirt.orgWhat 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

cbirt.orgNext Steps on STEPContinue data analyses

Teacher measuresOne-year student outcome measures

One-year follow-up studyFunded by OH Emergency Medical Services (Dr. Keith Yeates lead investigator)

cbirt.orgNext Steps on STEPWork with states to implement

Fidelity is important: Using part of the recipe for success may not lead to the same outcomes

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STEP: Key components

Coordinator at state/regional Department of Education

Regional liaisons Coordinator at hospital

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

Join the Conversation

cbirt.orgContact meContact me

Ann Glang, PhDCenter on Brain Injury Research and Training

Teaching Research InstituteWestern Oregon Universitywww.cbirt.orgglanga@cbirt.org