Supporting Students with TBI in Supporting Students with TBI in the School Settingthe School Setting

AECMN Annual Conference

Atlanta, GAOctober 28, 2011

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Contact meContact me

Ann Glang, PhDCenter on Brain Injury

Research and TrainingTeaching Research InstituteWestern Oregon Universitywww.cbirt.orgglanga@cbirt.org

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AcknowledgementsAcknowledgements

National Institute for Disability Rehabilitation Research

Oregon Department of EducationOffice of Special Education Programs

CHALLENGES:WHY ARE CHILDREN WITH TBI

SO DIFFICULT TO SERVE?

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CHALLENGE #1:CHALLENGE #1:Resource AllocationResource AllocationMost resources for TBI rehabilitation are spent in the first few days of care

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Challenge #1:Resource Allocation

64% of children with moderate TBI receive no follow-up care (Hawley et al. 2004)

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Challenge #2:Parent Expectations

Often believe that rapid pace of early recovery will continueParent and educator expectations may not match

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Parent ExpectationsParent 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

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Parent ExperienceParent Experience• Often new to the

special education system

• Under tremendous stress (emotional, physical, financial)

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CHALLENGE

Often parent-professional relationship becomes adversarial Different expectationsHigh stress

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PARENTS AS ADVOCATES

Breakdown in family-school communication is the most frequent reason for mediation and due process

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Challenge #3:Communication Breakdown

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

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Back to School StudyBack to School Study

Focus:

Hospital-school transition experience of children with ABI

Inclusion criteria: 24 hour hospitalization

(Glang, Todis, Thomas et al., 2008)

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Back to School Study(US Department of Education, Grant # H324C010113)

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

N = 56Inclusion criteria: 24 hour hospitalization76% of children had severe TBI

Glang, Todis, Thomas et al., 2008

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Back to School Study Back to School Study FindingsFindingsKey factors related to provision of formal special

education or 504 services: injury severityhospital-school transition services

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Back to School Study Back to School Study FindingsFindingsStudents who received rehabilitation services

had excellent transition services

Students who did not go to rehabilitation often did not get connected to school services

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Challenge #4:Under-identification for Special Education

Special education is the ticket to rehabilitation in school

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But, we do not have an accurate

number of how many children with TBI

have persisting disability…and should

be receiving special education

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Incidence of Brain Injury:National Data

Each year an average of 626,000 TBIs occur among children62,000 children are hospitalized564,000 children are seen in emergency

departments

CDC 2007

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Under-identification for Special Education in the U.S.

Cumulative total school-aged children living with disability from TBI: 145,000*

Total on Federal Sped. census (2007): 23,509**

*Zaloshnja E, Miller T, Langlois JA, Selassie AW. Prevalence of long-term disability from traumatic brain injury in the civilian population of the United States, 2005. J Head Trauma Rehabil. 2008;23(6):394–400. PMID:19033832.

**(www.ideadata.org)

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Wide Variability

Massachusetts (pop. 6.5 million)Students with TBI: 5,826

Washington (pop. 6.5 million)Students with TBI: 350

www.ideadata.org

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Under-identification

Lack of Awareness

Apparent Low Incidence

Lack of Training

Lack of ResearchMoney

Lack of Appropriate

Services for Kids

who are ID

Under-Identification Cycle

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CHALLENGE #5:Unique Student Characteristics

Unfamiliar to educators

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Student Characteristics

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

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“Forgotten” Injuries

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

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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

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Unique Disability

ABI is an “invisible disability”Students may have no physical signs of

disability

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InvisibilityInvisibility

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

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Challenge #6:Poor Awareness of TBI in SchoolsPreservice training in ABI is lacking

Only 1/8 commonly used Special Education texts devotes chapter to TBI

Inservice training is often ineffective (one-shot workshops with little transfer)

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Educator Training in TBI

Survey of educators in Pacific NorthwestSample: Teachers who were currently

working with students with TBIN = 65

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Have you had training in acquired brain injury?

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How many school staff are aware of student’s TBI?

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“As educators, we don’t have

a handle on this disability”~Oregon special education administrator

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Summary of Challenges

Individual• Poor school

outcomes• Parents and

educators have difficulty working together

SystemicEducators unaware

of TBIPoor hospital-

school linkage

STRATEGIES:IMPROVING SCHOOL

OUTCOMES

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Good Teaching is Good Teaching

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Domain-specific InterventionsE.g.: for memory

problems• Teaching and

monitoring use of compensatory systems:– Planner– PDA– Cell phone alarm– Picture Schedule

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Global Interventions

Comprehensive systems of interventions validated with students with other disabilities

Positive behavior supports (PBS) Direct Instruction Self-regulated strategy instruction Building Friendships

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Hypothesis Testing

Assess Intervene Assess

LearNet:http://www.projectlearnet.org

Interactive website with evidence-based interventions and tools for home and classroom use

Mark Ylvisaker, PhD

Strategies:Improving parent-educator

partnership

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Parent-Professional Collaboration

Children whose parents are involved in their education have better school and post-school outcomes

Parents can learn effective communication skills (Walker et al., 1996; Glang et al., 2007)

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Brain Injury Partners:Navigating the School System

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Parent Training in Effective Advocacy

Communication skillsResourcesSelf-care strategiesAction planning tool

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Parent Training in Effective Advocacy Skills

Brain Injury Partners

http://free.braininjurypartners.com

STRATEGIES:IMPROVING EDUCATOR

CAPACITY

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Recommendations for Teacher Training

To have an impact on students, TBI training and support for educators must:Relate in practical ways to their everyday

interaction with studentsBe ongoingInvolve specific teacher assignments and

intervention experiments with concrete feedback, including collaborative problem solving

Ylvisaker, et al. 2001

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Recommendations for Teacher Training

To have an impact on students, TBI training and support for educators must:Be broadly consistent with the school’s

culture and existing constraints on teachers’ time, and meet the objectives of those seeking help

Ultimately result in improvements in the student’s performance

Ylvisaker, et al. 2001

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States Implementing TBI Resource Team Model

Arizona Hawaii Iowa Kansas Nebraska Oregon Tennessee

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Statewide TBI Resource Team

Inservice training & consultation to educators working with students with brain injury

General or tailored to an individual studentMultidisciplinary team trained in pediatric

brain injury

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Team Membership

Varies according to regional needsAll members based in schoolsIncludes representatives from some or all of

the following disciplines

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Team Membership

General educator Special educatorSchool psychologist AdministratorParaprofessional Individual with TBIPhysical therapist CounselorSchool nurse ParentOccupational therapistSpeech/language therapist

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Team Membership:Expectations

Participate in intensive trainingOnce trained, provide consultation and

training to others

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Training Content

Incidence, etiology & effects of TBIFamily-school partnershipBehavior managementFacilitating social integrationPromoting academic successOrganizational strategiesEffective consultation and presentation

techniques

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Training Process

10 - 12 full days of traininghomework assignments, application

activitiesmentorship

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Special Education Eligibility in the Area of TBI (1994-2004)

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Arizona Students with Special Education Eligibility in TBI

1998-1999 701999-2000 932000-2001 3072001-2002 3132002-2003 3192003-2004 374

STRATEGIES:IMPROVING HOSPITAL-SCHOOL

LINKAGE

Student Transition and reEntry

Program (STEP)

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Importance of Transition

Lack of communication between hospital and school contributes to under-identification for special education of students with TBI

When hospital and school staff work on transition together, the student benefits

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STEP Model

State Department of Education provides a single point of contact for all hospitals to call

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STEP Model

DOE informs trained regional liaison

Regional liaison informs the school, offers resources to family and school

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STEP Ongoing Support

School staff access training and support as needed

Progress of students is tracked by DOE annually

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R4

R3

R6 R1

R2

R7

R5

R8

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STEP evaluation

Randomized controlled trial

Sites in Ohio, Colorado, Oregon5 hospitals, 3 Depts. Of Education

Current N = 55 (rolling enrollment; total sample = 140)

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Sample

Children/youth ages 5-19 who:Are enrolled in schoolSustain TBI Are hospitalized at least overnight

One ParentTwo Teachers

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Study Design: RCT

Student assigned to STEP or usual careParent and 1-2 teachers complete baseline

measuresReassessment at one year T2 now coming inT0 in hospital, T1 at 30 days post-injury, T2

at 1 year post-injury

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Preliminary Findings

Measures (reported here)

Parent surveySchool records

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Sample: Age at Injury

Mean age: 11.8 years (SD =3.8 yrs)Range: 5 – 17 years

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Severity of Injury

N = 55

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Student Grade

N = 55

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Received inpatient rehabilitation services?

N = 55

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Special Education Services

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Results by TX Condition

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

Example: parent satisfactionsatisfied or very satisfied

Usual care: 78%, STEP: 84%

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Control for rehabilitation services status

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

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Tx effects controlling for rehabilitation services status

Procedures:

Sample divided by Rehab (28) vs. No Rehab (27)

Each group contained tx & control

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% Participants with IEP at Time 2

N = 55

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Parent Satisfaction with IEP Time 2

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Services

Students in STEP received more support services across domains than students in Usual Care condition:

Academic 47% vs. 18% Speech/Language 24% vs. 9%Social behavioral 24% vs. 0% Medical 18% vs. 9%

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Parent Satisfaction at Time 2

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Big Picture

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

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Big Picture

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

Were more likely to be identified for special education

Received more support services Parents found school staff more helpful Parents expressed more satisfaction with IEPs and

with overall services

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Positive Features of STEP model

Makes modest demands on hospitals, school systems, and parents

AffordableFlexible/Adaptable Sustainable

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Thanks for inviting me