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

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

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

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

8. cbirt. org 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. cbirt. org Parent Experience Often new to the special education system Under tremendous stress (emotional, physical, financial)

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

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

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

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

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

19. cbirt. org 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. cbirt. org 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)www.ideadata.org

21. cbirt. org 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. cbirt. org Under- identification Lack of Awareness Apparent Low Incidence Lack of Training Lack of Research Money Lack of Appropriate Services for Kids who are ID Under-Identification Cycle

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

24. cbirt. org Student Characteristics Inconsistent learning profiles Initial improvement can be dramatic Effects of TBI are subtle and confusing Heterogeneity of disability

25. cbirt. org “Forgotten” Injuries Child injured at an early age – impact not seen until years later

26. cbirt. org 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. cbirt. org Unique Disability ABI is an “invisible disability” Students may have no physical signs of disability

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

31. cbirt. org Have you had training in acquired brain injury?

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

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

34. cbirt. org 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. cbirt. org Good Teaching is Good Teaching

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

38. cbirt. org 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. cbirt. org Hypothesis Testing AssessInterveneAssess 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. cbirt. org 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. cbirt. org Brain Injury Partners: Navigating the School System

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

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

45. STRATEGIES: IMPROVING EDUCATOR CAPACITY

46. cbirt. org 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. cbirt. org 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. cbirt. org States Implementing TBI Resource Team Model Arizona Hawaii Iowa Kansas Nebraska Oregon Tennessee

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

51. cbirt. org Team Membership General educatorSpecial educator School psychologistAdministrator ParaprofessionalIndividual with TBI Physical therapistCounselor School nurseParent Occupational therapist Speech/language therapist

52. cbirt. org Team Membership: Expectations Participate in intensive training Once trained, provide consultation and training to others

53. cbirt. org Training Content Incidence, etiology & effects of TBI Family-school partnership Behavior management Facilitating social integration Promoting academic success Organizational strategies Effective consultation and presentation techniques

54. cbirt. org Training Process 10 - 12 full days of training homework assignments, application activities mentorship

55. cbirt. org Oregon Students (Age 3-21) with Special Education Eligibility in the Area of TBI (1994- 2004)

56. cbirt. org Arizona Students with Special Education Eligibility in TBI 1998-1999 70 1999-2000 93 2000-2001 307 2001-2002 313 2002-2003 319 2003-2004 374

57. STRATEGIES: IMPROVING HOSPITAL-SCHOOL LINKAGE

58. Student Transition and reEntry Program (STEP)

59. cbirt. org 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

60. cbirt. org STEP Model State Department of Education provides a single point of contact for all hospitals to call

61. cbirt. org STEP Model DOE informs trained regional liaison Regional liaison informs the school, offers resources to family and school

62. cbirt. org STEP Ongoing Support School staff access training and support as needed Progress of students is tracked by DOE annually

63. cbirt. org R4 R3 R6 R1 R2 R7 R5 R8

64. cbirt. org STEP evaluation Randomized controlled trial Sites in Ohio, Colorado, Oregon 5 hospitals, 3 Depts. Of Education Current N = 55 (rolling enrollment; total sample = 140)

65. cbirt. org Sample Children/youth ages 5-19 who: Are enrolled in school Sustain TBI Are hospitalized at least overnight One Parent Two Teachers

66. cbirt. org Study Design: RCT Student assigned to STEP or usual care Parent and 1-2 teachers complete baseline measures Reassessment at one year T2 now coming in T0 in hospital, T1 at 30 days post-injury, T2 at 1 year post- injury

67. cbirt. org Preliminary Findings Measures (reported here) Parent survey School records

68. cbirt. org Sample: Age at Injury Mean age: 11.8 years (SD =3.8 yrs) Range: 5 – 17 years

69. cbirt. org Severity of Injury N = 55

70. cbirt. org Student Grade N = 55

71. cbirt. org Received inpatient rehabilitation services? N = 55

72. cbirt. org Special Education Services

73. cbirt. org Results by TX Condition No statistically significant differences between outcomes for STEP vs. Usual Care Example: parent satisfaction satisfied or very satisfied Usual care: 78%, STEP: 84%

74. cbirt. org Control for rehabilitation services status Does the effect of STEP depend upon whether or not the student had rehabilitation services?

75. cbirt. org Tx effects controlling for rehabilitation services status Procedures: Sample divided by Rehab (28) vs. No Rehab (27) Each group contained tx & control

76. cbirt. org % Participants with IEP at Time 2 N = 55

77. cbirt. org Parent Satisfaction with IEP Time 2

78. cbirt. org Services Students in STEP received more support services across domains than students in Usual Care condition: Academic47% vs. 18% Speech/Language24% vs. 9% Social behavioral 24% vs. 0% Medical 18% vs. 9%

79. cbirt. org Parent Satisfaction at Time 2

80. cbirt. org Big Picture When they returned to school, children/youth who received inpatient rehabilitation received similar services in school setting across treatment condition

81. cbirt. org 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

82. cbirt. org Positive Features of STEP model Makes modest demands on hospitals, school systems, and parents Affordable Flexible/Adaptable Sustainable

83. cbirt. org Thanks for inviting me