Identification and School Transition for Children with TBI

1. Identification and School Transition for Children with TBI Cynthia A. Plotts National Association of School Psychologists March 3, 2010

2. Scope of problem • TBI a leading cause of death and disability among school-age children (Yeates & Taylor, 2006) • Annual incidence about 1.4 million each year (CDC, 2008): DOES NOT include persons treated in settings other than emergency rooms or hospitals, or persons for whom TBI is not diagnosed or not treated • About 75% of TBIs considered “mild” and only 50% are reported to medical professionals (CDC, 2008); approximately 1/550 school-age children will sustain a TBI that can lead to long-term disability (Arroyos-Jurado, Paulsen, Ehly, & Max, 2006)

3. Scope of problem: texas • 2007-2008 school year: 1,424 students ages 0-22 served in special education under TBI (TEA, 2008) • 2004 DSHS (Johnson, 2007): 6,432 individuals ages 1-21 sustained TBI according to cases reported to the Trauma Registry (only report cause of injury for hospitalizations ≥ 48 hours) • Of the 474, 681 children served through special education in TX 2007-2008, only 0.3% were classified as TBI CONCLUSION: Underidentification or misclassification very likely in TX; national data leads to a similar conclusion

4. Issues in identification • Sequelae are not obvious or are not linked to the TBI (Glang et al., 2008) • Onset of symptoms may be delayed until a later point in development • Individuals who sustain TBIs to be at risk for other health conditions, including substance abuse, epilepsy, emotional disorders, and Alzheimer’s • School appraisal staff may misidentify if records/history not sought or available • Underreporting to schools by medical and/or rehabilitation facilities (Langlois, Rutland-Brown, & Wald, 2006)

5. pURPOSEs This research was conducted through a grant from The Texas Department of State Health Services (DSHS) as part of the three-year implementation grant, TX TBI Partnership Initiative. Purposes of assessing the feasibility of developing a separate TBI Registry and to address gaps in identifying, reporting, and provision of school-based services for children and adolescents in Texas who sustain a TBI. The following findings represent a portion of the data in a 2008 Report from a Needs & Resources Assessment .

6. QUESTIONS addressed • What is the current status of TBI data collection in Texas? • How well are children and adolescents with TBI who are identified in the medical community transitioned to the public school system? • How can school-based identification of children with TBI be improved?

7. METHODs • web-based surveys • Emergency Medical Services entities and hospitals that report TBI to the state health agency • stakeholders in the TBI identification system • states identified by CDC as having registries or surveillance systems for reporting of TBI • TBI rehabilitation providers • directors of special education across the state • telephone interviews • directors of such state TBI registries • a sample of special education directors • reviews • TX data collection system • policies and procedures for the state education agency regarding identification and services for students with TBI.

8. Findings: Data collection system • Quality and accuracy of data negatively affected by lack of immediate inspection and cleaning of data, e.g., out of range values, missing info, incorrect/incongruent values (staffing & funding issues) • Age of data affected usability (2004 most recent available in 2008) • Reporting format made it difficult to identify school-age students with TBI for monitoring and referral • No means to match survivors/families with services or track outcomes of interventions (HIPPA issues)

9. Findings: ems & hospital • Stratified sample by agency type and geographical location with final survey sample of 229 EMS providers and hospitals. Response rate was 35% (81 respondents) • 88% of respondents submitted data to Trauma Registry • Fewer than ½ of EMS and ¾ of hospital respondents reported receiving training to use the EMS/Trauma Registry • Most hospitals reported referrals to acute care, long-term care, and specific therapy services

10. Findings: TX Stakeholder survey Consensus among those surveyed that a separate TBI Registry is needed to: • Generate useful data regarding occurrences, outcomes, and costs • Connect individuals affected by TBI to appropriate services • Seek and obtain funding from legislature for prevention, treatment, residential care • Prevent injury by gathering systematic data about risk factors Incidence data for school-age groups viewed as imperative to address identification and public school service issues

11. Findings: State tbi REGISTRIES What is a TBI Registry? According to the National Center for Injury Prevention & Control www.dcd.gov/ncipe/profiles/tbi/about.htm It is a method of systematic and ongoing data collection that is population-based, includes personal identifying and contact information for each case, and may be used for follow-up of cases over time and/or for linking individuals to services. 17 states reported TBI Registries established by statute. The CDC site was not up-to-date and clarification was gained from Dr. Judith Langlois, personal communication, July 22, 2008)

12. Findings: State tbi registries • Survey mailed to 10 states identified as having registries, with 8 responses; 1routed out when reported no registry • Estimated costs of development $100,000 to $200,000, with maintenance $50,000 to $180,000 annually • Funding varied (trust funds, e.g., reinstatement fees for traffic violations, CDC, state govt./agencies)

13. Findings: State tbi registries

14. Findings: hospital follow-up Table 2 Number and Percent of Responses to: For your school-age patients with TBIs, do you ask parents for medical release to contact the child’s school?

15. Findings: hospital follow-up Table 3 Number and Percent of Responses to: What types of information do you provide to the child’s school? Note. Only hospitals that asked parents for medical release to contact the child’s school were asked to respond to this question.

16. Findings: hospital follow-up Table 4 Number and Percent of Responses to: Do you advise families to provide information about their child’s TBI to the school? Note. Only hospitals that did not ask parents for medical release to contact the child’s school were asked to respond to this questio

17. Findings: Special education directors • Survey sent to special education directors in all 20 regional service centers, designed to address procedures in place for transitioning students from hospital or rehab to schools • Stratified random sample based on regions; sample size 191 (some addresses invalid). Final sample of 71 (37% response rate) • All regions and sizes of regional service centers fairly well represented

18. Findings: special education directors Table 5 Number and Percent of Responses to: Do you have a person or team who is responsible for facilitating students who are transitioning from medical or rehabilitation agencies to school?

19. Findings: special education directors Table 6 Number and Percent of Responses to:Which of the procedures do you follow upon learning that a student who has sustained a TBI is being transitioned to a school in your district from a medical or rehabilitation facility?

20. Findings: special education director interviews • 4 responses: one directors noted no TBI in their district for years, declined interview • Respondents reflected urban, suburban and rural districts • All indicated limited experience with transition because so few identified with TBI in their districts • Districts are more aware child resided in the district before the accident, sustained a severe TBI, and then returned to the same district • For children with different patterns of residence and injury, identification and provision of services is much more problematic since they may not come to the awareness of the school. If they do, obtaining medical documentation is an issue, as is parent awareness of the potential significance of the TBI • Respondents expressed a desire that there be better communication and sharing of information between medical service providers and school service providers

21. Findings: rehabilitation providers • 11 post-acute brain injury rehabilitation centers identified by TX TBI Council • 6 centers responded to request for telephone interview • Patients tended to transfer directly from acute care hospitals, with average length of stay 2-6 months • Most children (about 85% on average) return to public schools • All facilities interviewed described some sort of transition procedure • Recurrent themes of need for earlier involvement with schools, increased follow-up, and increasing school resources to address educational needs of students with TBI

22. discussion Misclassification/underidentification in schools may stem from: • Lack of appropriate medical documentation, especially if TBI occurred years before or in another school district • Lack of awareness on part of parents, school staff, or medical providers that TBI is relevant to current educational needs • the prominence of related features, such as emotional or behavioral lability, orthopedic, speech or health problems, or severe learning difficulties resulting in a diagnostic process that fails to consider the broader symptomatology characteristic of moderate to severe TBI

23. discussion • Delayed manifestation of deficits stemming from the TBI, which research has shown may occur when environmental demands (such as higher level language comprehension or social skills) trigger expression of previously unrevealed cognitive or behavioral deficits • the exclusionary definition of TBI under federal law that requires that the injury be due to an external physical force and is not congenital, degenerative, or induced by birth trauma. This definition does not map neatly onto the medical diagnoses that would be made in hospital settings, where the broader term acquired brain injury (ABI) may be employed.

24. discussion • Lack of educational need demonstrated by the student. Not all individuals who sustain TBI demonstrate cognitive or academic skills deficits. In fact, these very skills may be the best preserved, and the student may not be referred for special education if learning problems are absent or mild • Treatment and services provided by alternative settings, such as private schools, home schools, and residential treatment centers not reporting to TEA. • In the absence of reliable incidence and tracking data from the event of the TBI to the referral and provision of services, it is not possible to determine how many children with TBI are being served outside of public school education systems, or, within public school, under special education, Section 504, or regular education programs.

25. recommendations • Dissemination of specific brochures regarding recognition of TBI as a potential risk for learning and behavior, generated by TEA for Child Find purposes. Such literature could be available to Emergency Departments, pediatricians, professionals in private practice such as occupational, physical, and speech therapists, and providers of Early Childhood Intervention Services • Education of medical professionals about the services available to children with TBI in public schools and education for school professionals about the possible outcomes for children with various levels of TBI. When a child experiences a TBI, even if it does not result in hospitalization, parents should be provided with information about possible complications and school-based resources for assessment and intervention

26. recommendations • Designation of individuals within medical settings as liaisons to public schools to facilitate the transition to public schools, including transfer of medical records, recommendations for support and resources, consultation with school professionals, and guidance for families navigating this transition • States consider a broader definition of TBI, as illustrated in the Ohio definition. Such a definition should include damage to the brain from medical conditions that are not external, such as strokes, tumors, and injuries caused by surgery. As part of this broader definition, Texas should promote recognition that a child with TBI may need formal evaluation to determine educational need. This evaluation should take into account need for frequent updating and progress monitoring, especially in the first year since the possibility that TBI-related learning and behavioral problems may emerge months or even years after the initial injury.

27. recommendations • School psychologists must be aware that TBI does not conform to the same trajectory as developmental learning and behavioral disorders. Therefore, misclassification can result not only in faulty tracking and monitoring, but also in inefficient or ineffective interventions. • School psychologists should routinely and thoroughly review medical and developmental history, with specific questions addressing head injury provided in background questionnaires and in parent interviews.

28. recommendations • Link the TBI Registry data to transition services for school-aged individuals with TBI. A TBI Registry with family contact information would provide a means for notification to families of the availability of school services and of the necessity for requesting transition planning • Require a reporting mandate for entities discharging a school-age child for return to public school • The pre-transition site may conduct full neuropsychological evaluation; these evaluations must take into account school-related issues, such as special education eligibility criteria and should be shared with the receiving school. If school personnel provide full individual evaluations, appraisal professionals should have specific training in TBI.

29. conclusions This investigation of identification, monitoring, and provision of services in Texas to school age children and adolescents who sustain a TBI indicates that there are many gaps in the system. Lack of continuity from medical and rehabilitation facilities to school settings contributes to underidentification, misclassification, and underutilization of available services for school-age individuals with TBI. These findings are consistent with the conclusion of Glang et al. (2008), based on their study of TBI services in Oregon, that the most significant, modifiable external variable contributing to identification of students with TBI for formal intervention is the hospital to school link.

30. references Arroyos-Jurado, E., Paulson, J. S., Ehly, S., Max, J. E. (2006). Traumatic brain injury in children and adolescents: Academic and intellectual outcomes following injury. Exceptionality, 14(3), 125-140. Azeredo, R. (2008, March). Children and youth services. Oklahoma City, OK: Injury Prevention Service, Oklahoma State Department of Health. Brown, B.E. (2008, April). Pennsylvania’s child and adolescent brain injury school re-entry program, brain STEPS. Document presented at the Annual Federal TBI Leadership Meeting. Centers for Disease Control (2008, September 23). What is traumatic brain injury? Retrieved November 24, 2008 from: http://www.cdc.gov/ncipc/tbi/TBI.htm. Glang, A., & Weber, R. (2008, April). Myths-understandings: Are states meeting the needs of children with TBI? Presentation at the Annual Federal TBI Leadership Meeting. Glang, A., Todis, B. Thomas, C.W., Hood, D., Bedell, G., & Cockrell, J. (2008). Return to school following childhood TBI: Who gets services? Neurorehabilitation, 23, 477-486.

31. references Hibbard, M., Gordon, W. A., Martin, T., Raskin, B., & Brown, M. (2001). Students with traumatic brain injury: Identification, assessment and classroom accommodations. New York: Research and Training Center on Community Integration of Individuals with Traumatic Brain Injury, Department of Rehabilitation Medicine, Mount Sinai School of Medicine. Johnson, K. M. K. (2007, January). Traumatic brain injuries in children age 0-21 years, Texas, 2003-2004. Report by Texas Department of State Health Services: Texas EMS/Trauma Registry. Ohio Legal Rights Service (2007). Students with TBI: Thriving beyond injury. Columbus, OH: Ohio Legal Rights Service. Region 18 Education Service Center. Child find. The Legal Framework for the Child-Centered Special Education Process. Retrieved December 18, 2008 from: http://fw.esc18.net/frameworkdisplayportlet/ESC18-FW-Summary.aspx?FID=125.

32. references TBI Project Information. Retrieved November 24, 2008 from: http://guest1.altec.org/ndsp/traumatic_brain_injury/TBIProjInfo.html. Texas Department of Assistive and Rehabilitative Services. What is ECI? Retrieved December 18, 2008 from: http://www.dars.state.tx.us/ecis/. Texas Education Agency (2008, March 10). Texas public school districts including charter schools: Students receiving special education services by disability and age, fall 2007-2008 PEIMS data. Retrieved November 24, 2008 from: http://www.tea.state.tx.us/cgi/sas/broker?_service=marykay&_program=adhoc.download_core_product.sas&rpt_yr=IN10804&rpt_type=.pdf. U. S. Office of Special Education Programs. About Child Find. Retrieved December 18, 2008 from: http://www.childfindidea.org/overview.htm. Yeates, K. O., & Taylor, H. G. (2006). Behavior problems in school and their educational correlates among children with traumatic brain injury. Exceptionality, 14(3), 141-154.