Supporting Students with TBI in the School Setting

1. Supporting Students with TBI in the School Setting AECMN Annual Conference Atlanta, GA October 28, 2011

2. Contact me Ann Glang, PhD Center on Brain Injury Research and Training Teaching Research Institute Western Oregon University www.cbirt.org glanga@cbirt.org

3. Acknowledgements • National Institute for Disability Rehabilitation Research • Oregon Department of Education • Office of Special Education Programs

4. CHALLENGES:WHY ARE CHILDREN WITH TBI SO DIFFICULT TO SERVE?

5. CHALLENGE #1:Resource Allocation Most resources for TBI rehabilitation are spent in the first few days of care

6. Challenge #1:Resource Allocation 64% of children with moderate TBI receive no follow-up care (Hawley et al. 2004)

7. Challenge #2:Parent Expectations Often believe that rapid pace of early recovery will continue Parent and educator expectations may not match

8. Parent 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

9. Parent Experience • Often new to the special education system • Under tremendous stress (emotional, physical, financial)

10. CHALLENGE • Often parent-professional relationship becomes adversarial • Different expectations • High stress

11. PARENTS AS ADVOCATES • Breakdown in family-school communication is the most frequent reason for mediation and due process

12. Challenge #3:Communication Breakdown There is no systematic method for connecting children and their families with services within the school and community following TBI.

13. Back to School Study Focus: Hospital-school transition experience of children with ABI • Inclusion criteria: 24 hour hospitalization (Glang, Todis, Thomas et al., 2008)

14. Back to School Study(US Department of Education, Grant # H324C010113) • Purpose: Document hospital-school transition experience of children with TBI • N = 56 • Inclusion criteria: 24 hour hospitalization • 76% of children had severe TBI Glang, Todis, Thomas et al., 2008

15. Back to School Study Findings Key factors related to provision of formal special education or 504 services: • injury severity • hospital-school transition services

16. Back to School Study Findings • Students who received rehabilitation services had excellent transition services • Students who did not go to rehabilitation often did not get connected to school services

17. Challenge #4:Under-identification for Special Education Special education is the ticket to rehabilitation in school

18. But, we do not have an accurate number of how many children with TBI have persisting disability…and should be receiving special education

19. Incidence of Brain Injury:National Data • Each year an average of 626,000 TBIs occur among children • 62,000 children are hospitalized • 564,000 children are seen in emergency departments CDC 2007

20. 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)

21. Wide Variability • Massachusetts (pop. 6.5 million) • Students with TBI: 5,826 • Washington (pop. 6.5 million) • Students with TBI: 350 www.ideadata.org

22. Apparent Low Incidence Under-identification Lack of Training Lack of ResearchMoney Under-Identification Cycle Lack of Awareness Lack of Appropriate Services for Kids who are ID

23. CHALLENGE #5:Unique Student Characteristics Unfamiliar to educators

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

28. Invisibility 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

29. Challenge #6:Poor Awareness of TBI in Schools Preservice 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)

30. Educator Training in TBI • Survey of educators in Pacific Northwest • Sample: Teachers who were currently working with students with TBI • N = 65

31. Have you had training in acquired brain injury?

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

33. “As educators, we don’t have a handle on this disability” ~Oregon special education administrator

34. Summary of Challenges Individual • Poor school outcomes • Parents and educators have difficulty working together Systemic • Educators unaware of TBI • Poor hospital-school linkage

35. STRATEGIES:IMPROVING SCHOOL OUTCOMES

36. Good Teaching is Good Teaching

37. Domain-specific Interventions E.g.: for memory problems • Teaching and monitoring use of compensatory systems: • Planner • PDA • Cell phone alarm • Picture Schedule

38. Global Interventions Comprehensive systems of interventions validated with students with other disabilities • Positive behavior supports (PBS) • Direct Instruction • Self-regulated strategy instruction • Building Friendships

39. 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

40. Strategies:Improving parent-educator partnership

41. 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)

42. Brain Injury Partners:Navigating the School System

43. Parent Training in Effective Advocacy • Communication skills • Resources • Self-care strategies • Action planning tool

44. Parent Training in Effective Advocacy Skills Brain Injury Partners http://free.braininjurypartners.com

45. STRATEGIES:IMPROVING EDUCATOR CAPACITY

46. 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 students • Be ongoing • Involve specific teacher assignments and intervention experiments with concrete feedback, including collaborative problem solving Ylvisaker, et al. 2001

47. 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

48. States Implementing TBI Resource Team Model Arizona Hawaii Iowa Kansas Nebraska Oregon Tennessee

49. Statewide TBI Resource Team • Inservice training & consultation to educators working with students with brain injury • General or tailored to an individual student • Multidisciplinary team trained in pediatric brain injury

50. Team Membership • Varies according to regional needs • All members based in schools • Includes representatives from some or all of the following disciplines