Students with Brain Injury in Oregon

1. Students with Brain Injury in Oregon Jay Gense, Pat Sublette, & Ann Glang Oregon Department of Education Teaching Research Institute-Eugene

2. David “The teachers say David is fantastic, such a joy. A little slow. But that’s David now. They don’t know David as any way else.” -David’s mother

3. David “I don’t know if the information about his brain injury got passed along to the 2nd grade teacher. It’s in his cumulative file, but I don’t know if anyone reads those.” -David’s mother

4. David “I had no training in TBI. It was tough…I wanted to push him, but I didn’t want him to get frustrated and shut down.” -David’s teacher

5. Educational Definition Traumatic Brain Injury …an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child’s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. The term does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma. U.S. Department of Education, Office of Special Education and Rehabilitative Services. (1999) Rules and Regulations: Part II. Federal Register, 64 (48), p. 12422.

6. Incidence of TBI in Oregon Where are the students?

7. National Incidence of TBI • For children and adolescents, annual estimates of head injuries are about 1.4 million • About 165,000 children will be hospitalized, with 16,000-20,000 serious enough to cause lasting effects • Almost twice as many males as females • Head injuries are the leading cause of death and disability in children

8. Sports & TBI • Amateur Boxing • Decrease in mental functioning consistent with acute TBI or post-concussive syndrome • Football • 20% of high school players sustain brain injury/season • Soccer • 5% due to head-to-head contact or heading the ball • Horseback Riding • 17% of all equestrian injuries are brain injuries (Brain Injury Association of America)

9. Under-identification for Special Education • 30,000 annually with persisting disabilities from brain injury • 10,000 annually (1/3) need SPED support • 130,000 cumulative total (K-12) • 23,509 on Federal Sped. 2005 census (ideadata.org)

10. National Statistics/100,000 • 180/100,000 infants children and adolescents are hospitalized for TBI annually • Krause 1995

11. SPED Incidence of TBI in Oregon • 269 Oregon students id with TBI in 2006 http://www.ode.state.or.us/policy/federal/idea/partb/2006_2007/table1.xls • 562,828 school children in Oregon in 2006 • At the 180/100,000 rate • 1008 students hospitalized for TBI annually in Oregon

12. Estimate of Students In Need of Special Education in Oregon • If only 1/3 of the 1000 or 333 hospitalized students need special education • An extremely conservative cumulative estimate ages 0-21 • 4000 students in Oregon alone

13. Disability Distribution Birth-21 ODE - 2004

14. Where are the Students with TBI in Oregon?

15. Back to SchoolProjectIdentification for Special Education at Discharge N = 75 (Oregon & Washington) • 28 report no problems • 21 are served under TBI category • 5 are served under another category • 20 are experiencing challenges and are not identified for special education

16. Back to SchoolProjectGeographic Distribution

17. Back to SchoolProjectSeverity of Injury

18. Back to SchoolProject School placement at re-entry

19. Why are Students with TBI Under-Identified and Under-Served?

20. Lack of Awareness of TBI • Plasticity myth – • “kids bounce back” • Child will be “fine” • medical field and community • Successful medical outcomes differ • from successful educational outcomes

21. Need of Knowledge • Need pre-service training in TBI • Increase knowledge of the impact of TBI on school performance • Increase feelings of competence for teachers

22. TBI the “Forgotten” Injury • Early injuries • impact may not be seen until years later • Families unaware of injury significance • school not informed • As student transitions through grades • Information of injury and its impact is lost in file purges

23. Today’s School Context • Shrinking school and community resources • Schools serving more students with more severe needslarge caseloads

24. Program Development is Challenging • Learning and behavioral characteristics are unlike students with other disabilities • The extreme diversity within the population • The extreme diversity within each child

25. TBI & Other Disabilities • Students with ADHD • 1.8x more likely to have a concussion • 1.7x more likely to have intercranial injury • 30 students with vision impairments have TBI as a secondary disability

26. Student’s Brain Injury: Often “Invisible” • Student looks “fine” • Student appears to be “recovered” • Student is no longer being followed by medical personnel

27. Apparent Low Incidence Under-Identification Lack of Training Lack of Awareness Limited Funding Lack of Right Services for Kids who are ID Under-identification Cycle

28. Learning Issues Commonly Associated with TBI

29. Children with Moderate to Severe TBI • 50-90% limitations in bathing, dressing, and walking • Children with 4 or more functional deficits: • 75% impairments in self-feeding, cognition, and behavior • 67% speech • 29% vision • 16% hearing Supplement. Rehabilitation for Traumatic Brain Injury in Children and Adolescents http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=hstat1.chapter.2633

30. Executive Function & Other Cognitive Impairments Children with pre-frontal injury may have language skills and other cognitive abilities and severe self-regulation deficits (Ylvisaker & Feeney, 2002)

31. impulsiveness poor social judgment social disinhibition egocentrism difficulty interpreting the behavior of others perseveration poorly regulated attention disorganization (in thinking, talking, and acting) weak goal formulation ineffective planning decreased flexibility/ shifting slowed processing diminished divergent thinking concrete thinking immature problem solving weak self-monitoring inefficient responses to feedback/ consequences reduced initiation dulled emotional responses Executive Functions Symptoms (Feeney, 2005)

32. Slowed rate of processing Difficulty concentrating; fatigue Difficulty screening out distractions external and internal Difficulty concentrating; fatigue Difficulty disengaging and engaging Attention-information processing impairments (Sohlberg & Mateer, 2001)

33. Memory & Learning • Memory almost always affected in TBI • Recent memories often more affected then long-term memories • Prospective memory • ability to carry out intended actions) • Working memory (i.e., 2-5 minutes) • May learn without awareness of having learned • Motor/procedural learning systems may be intact • Orientation may be a problem (Sohlberg & Mateer, 2001)

34. Behavioral Difficulties • Impulsivity • Social Disinhibition • Inappropriate behavior • Short temper • Easily frustrated

35. Hemiplegia: Motor paralysis of one side of body. Hemiparesis: Motor weakness of one side of the body. Ataxia: Loss of ability to coordinate smooth movements or steady gait. Hypotonicity: Low muscle tone of trunk or limbs. Rigidity: Resistance to movement in any range. Spasticity: Inappropriate sustained contraction of muscles Tremors: Involuntary movements from contractions of opposing muscles. Motor Sequelae Following TBI

36. Physical Sequelae of TBI • Fatigue • Vision & Hearing Looses • Headaches • Seizures • Fatigue & Reduced Stamina • Endocrine/Hormonal changes

37. Post-Concussional Symptoms • Headache • Fatigue • Dizziness • Sleep disturbance • Memory • Confusion

38. Developmental Overlay • Full effects of an earlier injury may not be evident until adolescence when children are expected to demonstrate increasing competence in executive functions and reasoning. • Skills may not develop if the relevant areas of the brain have been damaged (Alden & Taylor, 1997; Feeney & Ylvisaker, 1995; Mangeot et al, 2002; Ylvisaker & Feeney, 2002)

39. Secondary Problems • Children may also develop problems in the social and behavioral domains secondary to cognitive deficits. • deficits in executive functions • implications for the child’s behavior • classroom • peer relationships. • Secondary needs may become more pronounced in a child injured at an earlier age.

40. After the Injury What Schools Need

41. Transition Meetings • Pre-meeting with information from hospital personnel • FERPA and Due process must be followed • School must establish eligibility • 504/IEP (behavioral supports likely needed) • Have built-in review and revise plan about 4x per year

42. Present Physical Condition Toileting needs Transition needs Motor Skills Physical Limitations Activity Limitations Therapy Requirements Required Assistive Devices Self-Care Abilities Prescribed Medication Communication Abilities Behavior Concerns Cognitive Recovery Pattern Results of Evaluations Information to Get From the Hospital Upon discharge schools need to know…..

43. Recognize Potential Problems • Medical • Behavioral • Social • Cognitive He looks so good, but………. How will he function in the classroom?

44. Other Factors to Consider • How long since the injury • Extent of the injury • Co-existing conditions • Family/ home needs • School issues • Social/emotional • A time of change

45. What is Needed in Schools

46. Back To School Study • Interviewed 34 teachers of students with TBI • 85% had never attended training on TBI • 71% had no other resources to gain information

47. Understanding • For most children, rehabilitation takes place in school • Identification for special education is necessary to access services

48. Knowledge • The parents usually bear the responsibility to educate school personnel about the effects of TBI • Even when schools are aware of the TBI, many don’t associate certain behaviors with the injury

49. Information • Students may be viewed as: • malingering • lazy • disorganized • “just adolescent” • Many parents are not aware of potential school services available to their child

50. What We Are Doing