1. Ann Glang Center on Brain Injury Research and Training University of Oregon Alaska Brain Injury conference April 29, 2014

2. Thanks for inviting me 3. Outline Summary of issues in educating children with TBI Overview of promising practices o Hospital-school transition o Professional development for educators o Resources for educators and families 4. Collaborators Bonnie Todis, PhD Debbie Ettel, PhD Shari Wade, PhD Terry Stancin, PhD Jeanne Dise-Lewis, PhD Janice Cockrell, MD Michael Koester Gerard Gioia James Chesnutt Karen McAvoy Sondra Marshall 5. Funders National Institute of Disability and Rehabilitation Research (NIDRR) Health Resources Service Administration/Maternal and Child HealthTBI Program National Institute of Child Health and Human Development Oregon Department of Education 6. What Is CBIRT? Research center at University of Oregon Established in 1993 Focus: Conduct research and training to improve the lives of children and adults with TBI State programs: o Oregon TBI TEAM o OCAMP (Oregon Concussion Awareness and Management Program) 7. Go Ducks 8. CBIRT team 9. David The teachers say David is fantastic, such a joy. A little slow. But thats David now. They dont know David as any way else. ~Davids mother 10. David I dont know if the information about his brain injury got passed along to the 2nd grade teacher. Its in his cumulative file, but I dont know if anyone reads those. ~Davids mother 11. David I had no training in TBI. It was toughI wanted to push him, but I didnt want him to get frustrated and shut down. ~Davids teacher 12. MYTH There arent that many children with TBI 13. FACT TBI is a leading cause of disability and death among children and young adults 14. Incidence of Brain Injury Each year an average of 60,000 children (0-19) are hospitalized for TBI > 600,000 children treated in ED 180,000 children/youth living with long-lasting impairment from TBI References: Faul et al., CDC, 2010; Zaloshna et al., 2008 15. 0 50,000 100,000 150,000 200,000 250,000 300,000 0 to 4 5 to 9 10 to 14 15 to 19 20 to 24 #ofER& hospitalvisits Age groups Emergency room visits and hospitalizations by age group 16. CHALLENGES WHY ARE CHILDREN WITH TBI DIFFICULT TO SERVE? 17. Challenge Parents often believe that rapid pace of early recovery will continue Parent and educator expectations may not match 18. Parent Expectations I think parents can be the biggest obstacle to good transition back to school. Theyre dealing with denial, grieving, avoidance. When I call parents at home to follow up after the kid is back at school, I often hear, Theyre fine, theyre fine, everythings fine. ~Ohio parent advocate 19. Parent Experience Often new to the special education system Under tremendous stress (emotional, physical, financial) 20. Thinking about dealing with the school professionals regarding my child is very stressful and I feel very defensive most of the time but I try hard to hide it. ~ Parent 21. Challenge Often parent-professional relationship becomes adversarial o Different expectations o High stress 22. UNIQUE STUDENT CHARACTERISTICS Unfamiliar to educators 23. TBI Impacts All Aspects of Functioning N = 526 parents of children hospitalized for TBI (Hawley et al. 2004) Behavioral, emotional, memory and attention problems reported by: o 33% severe injuries o 25% moderate injuries o 10-18% of mild injuries 24. Student Characteristics Inconsistent learning profiles Initial improvement can be dramatic Effects of TBI are subtle and confusing Heterogeneity of disability 25. Forgotten Injuries Child injured at an early age impact not seen until years later 26. 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 27. Unique Disability TBI is an invisible disability Students may have no physical signs of disability 28. Invisibility I need to be careful how I say this Its almost like it wouldve been better if the injury were severe enough that we wouldve had to have gotten help. With TBI, the moderate to mildits invisible. People dont see it and then people dont get the help that they need. ~Parent 29. Academic Outcomes More severe injuries associated with more significant academic problems o 79% of children with severe injuries failed a grade or received special education services (Ewing-Cobbs et al., 1998) Even children with milder injuries are at risk o Slower acquisition of reading skills in children with mild TBI (Wrightson et al., 1995) 30. Poor Awareness of TBI in Schools Preservice training in ABI is lacking Inservice training is often ineffective 31. Educator Training in TBI Survey of educators in Pacific Northwest Sample: Teachers currently working with students with TBI N = 65 32. Have you had training in traumatic brain injury? 15% 85% YES NO 33. As educators, we dont have a handle on this disability ~Oregon special education administrator 34. Communication Breakdown There is no systematic method for connecting children and their families with services within the school and community following TBI. 35. Back to School Study (Glang, Todis, Thomas et al., 2008) Purpose: Document hospital-school transition experience of children with TBI N = 56 Inclusion criteria: 24 hour hospitalization 76% of children had severe TBI 36. Back to School Study (US Department of Education) 21% of students were identified for formal supports 41% of students received informal supports (e.g., schedule changes) 20% of students with severe TBI received no formal or informal supports 37. Back to School Study Findings Which students received formal special education or 504 services? Those who experienced severe injury Those who got hospital-school transition services 38. Integrating research and practice Accessing perspectives of state directors of special education 39. NASDSE Survey (2012-13) Survey of State Directors of Special Education (N = 43) How does your state identify and provide educational and support services to children with brain injury? 40. Under-identification 55% of respondents report that TBI count for their state is inaccurate 41. Why are the IDEA counts inaccurate? lack of awareness about TBI lack of communication between hospital and school students identified under different eligibility categories 42. Why are the IDEA counts inaccurate? parents under-report injuries narrow definition of TBI that excludes other forms of acquired brain injury 43. Eligibility Categories for TBI TBI: 40% Other Health Impaired: 12% Specific Learning Disability: 9% Emotional Disturbance: 6% Intellectual Disability and Multiple Disabilities: 5% each 44. Who provides leadership in TBI at the state DOE? 50% of states have dedicated TBI personnel at State Department of Education 45. 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 Under and mis-dentification 46. Addressing the Challenges Promising models o Student Transition re-Entry Program, TBI Team model o Brain 101 National Collaborative on Childhood Brain Injury Evidence-based resources 47. STEP: Student Transition and reEntry Program model Improving the link between hospital and school 48. STEP model Grounded in experience of families and of hospital and school personnel o Focus groups with hospital rehabilitation personnel, administrators, social workers o Interviews and observations with parents, teachers, school administrators, support personnel 49. STEP model State Department of Education (DOE) provides a single point of contact DOE informs trained regional liaison Regional liaison o informs the school o offers resources to family and school 50. 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 51. R4 R3 R6 R1 R2 R7 R5 R8 52. TBI Resource Team model Systematic training for inter-disciplinary team of school-based educators o School psychologists, parents, special educators, paraprofessionals, SLPs, PTs, OTs Promising Practice: Comprehensive Professional Development for Educators 53. Team members participate in year-long training, e.g., o Instructional techniques, behavioral support strategies, partnerships with families, transition Team members provide consultation to schools serving students with TBI TBI Resource Team model 54. Hawaii Colorado Tennessee Nebraska Oregon Pennsylvania States Implementing a TBI Resource Team Model 55. Team members provide training & consultation to educators working with students with TBI General or tailored to an individual student Activities can include: o Attend IEP meetings - Provide materials o Phone consult - Observe in classroom Statewide TBI Resource Team 56. Brain 101: The Concussion Playbook Training in effective concussion management for: Students Parents Coaching staff Educators 57. Overarching Goal of Concussion Management The biggest challenge in dealing with concussion is trying to change the culture. ~Oregon school board member 58. School-wide approach to concussion management Clear rules/expectations: School-wide concussion management guideline Consistent reinforcement of rules across settings Active involvement of administrators Proactive skills training: Students, parents, athletics staff and educators 59. http://brain101.orcasinc.com 60. Brain 101 Teen Athlete Training Program 61. Teen athlete video 62. Brain 101 Educator and Parent Training Programs 63. Evidence-based Resources CBIRT.org Resources for educators, families and service providerse.g., Supporting post-school transition Writing effective IEPs Effective assessment techniques 64. In the Classroom series (under development) Video-based learning modules for educators Collaborative project: o CBIRT o Colorado TBI Program o Alabama Dept. of Rehabilitation Services 65. In the Classroom series Target: Whats different about TBI Focus on topics identified by school personnel Video modeling: Use of examples and non-examples Accompanying handouts 66. ITC: Managing Severe Behavior Challenges Remain calm and positive State the situation clearly and simply Present yourself as a helper rather than an enforcer 67. Ineffective body language/tone of voice 68. Effective body language/tone of voice 69. Resources Colorado TBI Resource Network http://cokidswithbraininjury.com Brainline Kids www.brainline.org Project LearNet www.projectlearnet.org 70. Resources Pennsylvania Brain Steps programhttp://www.brainsteps.net/_orbs/ about/index.aspx Centers for Disease Control and Prevention (CDC) http://cdc.gov/traumaticbraininjury/ 71. National Collaborative on Childhood Brain Injury Membership includes state Department of Education staff, federal agency staff, researchers, advocacy group leaders. Goal: To develop recommendations for building statewide capacity to support students with brain injury http://cbirt.org/nccbi/ 72. NCCBI Goals Identify critical gaps in education services Make policy and research recommendations Share information, tools and resources on supports for children with TBI 73. NCCBI current efforts Policy workgroup Dissemination of NASDSE survey results White paper on statewide infrastructure (in press) White paper on mTBI 74. Like our facebook page: Cbirt Online Updates on news and research related to TBI, CBIRT events, and new resources Join the Conversation