1. CHILDREN AND YOUTH WITH TBI: IMPROVING SCHOOL OUTCOMES Ann Glang Center on Brain Injury Research and Training University of Oregon

2. Overview Under-identification Promising practices STEP model TBI Team model School-wide concussion management 3. 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 Narrow definition of TBI 4. UNDER-IDENTIFICATION FOR SPECIAL EDUCATION Special education is the ticket to rehabilitation in school 5. But, we do not have an accurate number of how many children with TBI have persisting disabilityand should be receiving special education 6. Impact Each year, approximately 10,000 children, ages 3-21 experience long-term challenges as a result of TBI Approximately180,000 children need special education supports Students with TBI on special education census: 25,000 7. Wide Variability Massachusetts (pop. 6.5 million) Students with TBI: 5,826 Washington (pop. 6.5 million) Students with TBI: 350 www.ideadata.org 8. Under-identificationLack of Awareness Apparent Low Incidence Lack of Training Lack of Research Money Lack of Appropriate Services for Kids who are ID Under-Identification Cycle 9. Challenge: Hospital-school transition There is no systematic method for connecting children and their families with services within the school and community following TBI. 10. Focus: Hospital-school transition experience of children with ABI Inclusion criteria: 24 hour hospitalization (Glang, Todis, Thomas et al., 2008) Back to School Study 11. 24% 76% Severe Mild/Moderate Back to School Project Severity of Injury 12. Back to School Project Age at Injury Mean 10.92 Median 12.00 Range 4-15 SD 3.26 13. Back to School Study (N = 68) At one month post-discharge: 21 report no problems 23 receive formalized educational support services 24 are experiencing challenges and are not referred for special education 14. Parental Concerns Regarding: Speech, language, & communication 0 20 40 60 80 Re-Entry 12 mo 24 mo No IEP IEP % 15. Parental Concerns Regarding: Physical / motor skills 0 10 20 30 40 50 60 Re-Entry 12 mo 24 mo No IEP IEP % 16. Parental Concerns Regarding: Social/behavioral skills 0 10 20 30 40 50 60 70 Re-Entry 12 mo 24 mo No IEP IEP % 17. 0 10 20 30 40 50 60 70 reentry 12 months 24 months IEP 504 No Services Back to School Project School Programming % 18. Was there communication between hospital & school? 39% 51% 10% YES NO Do Not Know 19. Summary of Findings Many children are not identified for special education Service patterns are stable, although TBI is not Communication is lacking Parents and educators are dissatisfied 20. Promising Practices STEP: hospital-school linkage to improve access to services TBI Team model Brain 101: Proactive training for all members of school community 21. STEP model Grounded in experience of families and of hospital and school personnel Focus groups with hospital rehabilitation personnel, administrators, social workers Interviews and observations with parents, teachers, school administrators, support personnel 22. STEP model State Department of Education (DOE) provides a single point of contact DOE informs trained regional liaison Regional liaison informs the school offers resources to family and school Parent training in advocacy skills 23. 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 24. R4 R3 R6 R1 R2 R7 R5 R8 25. STEP Evaluation Randomized controlled trial Sites in Ohio, Colorado, Oregon 5 hospitals, 3 Depts. Of Education 26. Sample N = 108 Children/youth ages 5-19 who: Were enrolled in school Were hospitalized at least overnight for TBI 27. Study Design: RCT Student assigned to STEP or usual care Parent and 1-2 teachers complete baseline measures Reassessment at 1 year post-injury T0 in hospital, T1 at 30 days post-injury, T2 at 1 year post-injury 28. Parent Measures State/Trait Anxiety Index Brain Injury Partners measures of advocacy skills Child Behavior Checklist CASP Child & Adolescent Scale of Participation CASE Child & Adolescent Scale of Environment Brief BRIEF (24 questions) STEP survey: parent concerns; services needed; services provided; satisfaction with school services 29. 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 30. Severity of Injury N = 108 31. Student Grade % of Sample N = 108 32. Received inpatient rehabilitation services? 33. Results Few statistically significant differences between outcomes for STEP vs. Usual Care Parent and teacher ratings similar 34. Does STEP make a difference? Significant findings: STEP parents report less anxiety (1 year post-injury) At 1 mo. post-injury STEP students demonstrated lower anxiety (parent rating, ASEBA DSM-4R criteria) 35. Significant findings: STEP parents report higher satisfaction with academic, vision/hearing, and physical/motor services (p < .05) STEP parents who had training on child advocacy skills showed significantly higher performance on advocacy knowledge (effect size, g = .71) Does STEP make a difference? 36. Does the effect of STEP depend upon whether or not the student had rehabilitation services? Control for rehabilitation services status 37. Treatment effects controlling for rehabilitation services status Procedures: Sample divided by Rehab vs. No Rehab Each group contained tx & control 38. One Year Post-Injury: Parent Ratings of Overall Satisfaction with Services by Treatment Group [No in-patient rehabilitation subgroup] STEP CONTROL All statistically significant differences between groups (P < .05) except medical services 39. Conclusions Children with TBI face unique challenges when they return to school Hospital-school transition is key for accessing school supports For students who do not receive rehabilitation, STEP can help 40. TBI Resource Team model Systematic training for inter-disciplinary team of school-based educators, e.g., School psychologists, parents, special educators, paraprofessionals, SLPs, PTs, OTs Promising Practice: Comprehensive Professional Development for Educators Glang, Todis, Sublette et al., 2010 41. Team members participate in year-long training, e.g., Instructional techniques, behavioral support strategies, partnerships with families, transition Team members provide consultation to schools serving students with TBI TBI Resource Team model 42. Hawaii Tennessee Kansas Nebraska Oregon Pennsylvania States Implementing a TBI Resource Team Model 43. Team members provide training & consultation to educators working with students with TBI General or tailored to an individual student Activities can include: Attend IEP meetings - Provide materials Phone consult - Observe in classroom Statewide TBI Resource Team 44. TBI Team model: Example of Impact (2008-2009) Liaisons 9 Active Team members 50 Presentations on TBI 43 Attendees at presentations 734 Mean satisfaction rating 3.65 (4 pt scale) Students coached 156 Student contacts made 486 Avg. meetings/contacts per student 3.1 45. TBI TEAM MODEL Impact of systematic training on identification rates for special education services 46. Oregon Students (age 3-21) with Special Education Eligibility in the area of TBI (1994-2004) 47. Requires school/family/medical collaboration Effective Concussion Management 48. Overarching Goal of Concussion Management The biggest challenge in dealing with concussion is trying to change the culture. ~Oregon school board member 49. School-wide approach to concussion management Clear rules/expectations: School-wide concussion management guidelines Consistent reinforcement of rules across settings Active involvement of administrators Proactive skills training: Students, parents, athletics staff and educators 50. Brain 101: The Concussion Playbook Training in effective concussion management for: Students Parents Coaching staff Educators 51. Content CDC Heads Up toolkit and Consensus Statement on Concussion in Sport (McCrory et al., 2009) Interviews with researchers, certified athletic trainers, physicians, neuropsychologists, and public health professionals Input from teen marketing consultant---invaluable! 52. You dont know how bad it is until it happens to your kid. ~Parent of athlete who sustained concussion 53. If I suspected my teammate had gotten a concussion, I wouldnt want to rat them out. That would give away their season. ~High school athlete 54. Recommendations from interviews about teen athlete program Content should be: Real and truthful Limit reading required Use animation and video Supportive of the team 55. Brain 101 Teen Athlete Training Program 56. Teen athlete video 57. Brain 101 Educator and Parent Training Programs 58. Brain 101 59. Brain 101 60. Brain 101: Does it work? Evaluation: 24 high schools in Oregon Criteria: ATC at school 61. Research Design Random assignment to Brain 101 or usual care condition School-wide implementation - Administrator and ATC lead effort - Online education for all 4 target groups - Information about establishing school-wide management guidelines 62. Sample Intervention (Brain 101) Control (Usual care) Students 2179 2561 High Schools 12 13 63. Sample Intervention (Brain 101) Control (Usual care) Race 62% Caucasian 60% Caucasian 64. Concussions per 1,000 Fall Athletes 65. Evaluation of Brain 101: Outcome measures Student and parent knowledge Student attitudes and self-efficacy Parent attitudes and intention Injury logs: how is concussion managed? 66. Student knowledge If you get a concussion, it could be bad for you to text or read for a few days. True False I dont know 67. Student attitudes Miguel is a star quarterback and tonight there is a college scout in the stands. Right before the end of the first quarter, Miguel is tackled hard. The coach thinks Miguel might have gotten a concussion and pulls him from the game. As a result, the team doesnt have a good offense and loses the game. I feel the coach made the right decision to keep Miguel out of the game. Agree Disagree 68. 3.0 3.2 3.4 3.6 3.8 4.0 4.2 4.4 4.6 4.8 5.0 T1 T2 AverageClassroomScore Control Schools Intervention Schools Student Attitudes 69. Student Self-efficacy How likely is it that you would continue playing a sport even if you thought you had a minor concussion because you wouldnt want to let your team down? 70. 3.0 3.2 3.4 3.6 3.8 4.0 4.2 4.4 4.6 4.8 5.0 T1 T2 AverageClassroomScore Control Schools Intervention Schools Student Self-Efficacy 71. Parent knowledge You have to be hit on the head to have a concussion. True False I dont know 72. 50% 55% 60% 65% 70% 75% 80% 85% 90% 95% 100% T1 T2 PercentCorrectlyEndorsed Control Schools Intervention Schools Parent Knowledge 73. Parent attitudes Your daughter, Katie, suffered a concussion three weeks ago while cheerleading. Shes mostly healed but still has a few symptoms. She tires easily and is bothered by bright lights. She is a straight-A student and has always participated in the science fair. She was almost done with her research and had a project in mind before she got the concussion. Although the doctor has not cleared her to go back to school, Katie wants to start working on her science project. Should Katie work on the science project? 74. 3.0 3.2 3.4 3.6 3.8 4.0 4.2 4.4 4.6 4.8 5.0 T1 T2 AverageClassroomScore Control Schools Intervention Schools Parent Attitudes 75. Parent intentions If Katie was your daughter, how likely is it that you would let her work on her science project? Very unlikely Unlikely Neither likely nor unlikely Likely Very likely 76. 3.0 3.2 3.4 3.6 3.8 4.0 4.2 4.4 4.6 4.8 5.0 T1 T2 AverageClassroomScore Control Schools Intervention Schools Parent Intentions 77. Average Number Days to Full Activity 78. Percent Receiving Accommodations 79. Established Concussion Management Team Brain 101 schools: 77% Usual Care schools: 20% 80. aglang@uoregon.edu 541-346-0594 http://brain101.orcasinc.com 81. Discussion What resources could currently be accessed in Alaska to support children/teachers/families? Vision: What resources would you like to see put into place? 82. Like our facebook page: Cbirt Online Updates on news and research related to TBI, CBIRT events, and new resources Join the Conversation