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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 - PowerPoint PPT Presentation
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cbirt.org
Ann Glang, Ph.D.Center on Brain Injury Research and Training
cbirt.org
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 [email protected]