School to community: Using evidence to improve hospital-school transition for children with TBI

1. School to community:Using evidence to improve hospital-school transition for children with TBI Ann Glang, Ph.D. Center on Brain Injury Research and Training cbirt.org

2. Outline Summary of issues in educating children with TBI Student Transition Re-Entry Program Preliminary findings from multi-site study

3. Partners • Cincinnati Children’s Hospital Medical Center • Nationwide Children’s Hospital • Rainbow Babies & Children’s Hospital • MetroHealth, Cleveland • The Children’s Hospital, Denver • Legacy Emanual Hospital, Portland   • Center on Brain Injury Research and Training • Colorado Department of Education • Ohio Department of Education • Oregon Department of Education

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

5. Challenge Parents often believe that rapid pace of early recovery will continue Parent and educator expectations may not match

6. 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

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

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

9. CHALLENGE Unique Student Characteristics Unfamiliar to educators

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

11. “Forgotten” Injuries • Child injured at an early age – impact not seen until years later

12. 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

13. Unique Disability • TBI is an “invisible disability” • Students may have no physical signs of disability

14. 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

15. Poor Awareness of TBI in Schools • Preservice training in ABI is lacking • Inservice training is often ineffective

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

17. Have you had training in acquired brain injury?

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

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

20. 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

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

22. 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

23. Addressing the challenges • Less is more: Identifying one area for intervention • Hospital-school transition: Biggest bang for the buck

24. STEP: Student Transition and reEntry Program model Improving the link between hospital and school

25. STEP model • Grounded in experience of families and of hospital and school personnel in five states • Focus groups with hospital rehabilitation personnel, administrators, social workers • Interviews and observations with parents, teachers, school administrators, support personnel

26. STEP (Student Transition and re-Entry) model • State Department of Education (DOE) provides a single point of contact for all hospitals to call • DOE informs trained regional liaison • Regional liaison • informs the school • offers resources to family and school

27. 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

28. R8 R1 R6 R2 R5 R7 R4 R3

29. Key elements of STEP • Facilitates Special Education identification of students with TBI—especially those not discharged from rehabilitation • Provides user-friendly resources to families and schools • Tracks kids through school so TBI is not “forgotten”

30. STEP Evaluation • Randomized controlled trial • Sites in Ohio, Colorado, Oregon • 5 hospitals, 3 Depts. Of Education

31. Sample • Current total N = 136 (ages 5 – 20) • Preliminary analysis: Subset n = 70, data collected so far • Children/youth ages 5-19 who: • Are enrolled in school • Were hospitalized at least overnight for TBI

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

33. Parent Measures • State/Trait Anxiety Index • Brain Injury Partners measures of advocacy skill • Child Behavior Checklist (CBCL, aka Achenbach) • CASP – Child & Adolescent Scale of Participation • CASE – Child & Adolescent Scale of Environment • Brief BRIEF (24 questions) • STEP measures of parent concerns/services needed/provided/satisfaction

34. 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 (Scale A)

35. Preliminary Findings • Measures (reported here) • Parent survey • School records

36. Sample: Age at Injury • Mean age: 14.11 years (SD =3.81 yrs) • Range: 5.0 - 20 years Note: Analysis results for subset of total sample collected so far, n = 70

37. Severity of Injury Frequency Count N = 70

38. Student Grade Frequency count N = 70

39. Received inpatient rehabilitation services? Percent of total sample N = 136

40. Special Education Services Percent of total sample of students post-injury who have IEP N = 136

41. Students receiving SpEd. Services n = 35, of sub-sample n = 70

42. Does STEP make a difference? When they returned to school, children/youth who received inpatient rehabilitation received similar school services across treatment condition

43. Results by TX Condition • No statistically significant differences between outcomes for STEP vs. Usual Care

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

45. Treatment effects controlling for rehabilitation services status Procedures: • Sample divided by Rehab (28) vs. No Rehab (42) for n = 70 subset • Each group contained tx & control

46. % Students (non-rehab) with IEP at Time 2 N = 42 No Rehab

47. % Parent Overall Satisfaction at Time 2 N = 42 No Rehab

48. STEP children/youth who did not receive rehabilitation received more types of support service than did students in usual care Types of services: Academic, Speech-Language, Vision, Social-Behavioral, Physical, Medical, and Transition

49. Big Picture For children/youth who did not receive rehabilitation, those in STEP showed better results compared with Usual Care: more likely to be found eligibility for special education under the TBI category parents report school staff more helpful parents express more satisfaction with school services

50. What does it mean? Promising initial results suggest that for students who do not receive rehabilitation, STEP can help. Students who get STEP support are more likely to get connected with appropriate services