IN AUGUST 2011, the Summit on Childhood Brain Injury was held at State College, Pennsylvania, to develop recommendations for building statewide capacity to support students with brain injury in educational settings. The Health Resource Services Administration (HRSA) Traumatic Brain Injury (TBI) Program within the Department of Health and Human Services supported this meeting.
The 19 meeting participants represented 8 states (Colorado, Kansas, Maryland, Nebraska, Ohio, Oregon, Pennsylvania, and Tennessee) and the District of Columbia. Meeting participants met 1 or more of the following criteria: representative of a state Department of Education (DOE) who provides statewide leadership and coordination of services for students with brain injury (n = 3); HRSA TBI grant recipient who has a strong partnership with his or her DOE (n = 10); or researcher in the field of pediatric brain injury (n = 3). In addition, representatives from both the HRSA TBI Program and the National Institute of Disability Rehabilitation Research attended the meeting (n = 3). Of the 19 members, 1 participant was a parent of 2 young adults with TBI and 4 others were family members of individuals with TBI. This meeting resulted in a variety of initiatives, one of which was to develop a white paper outlining necessary components for serving students with brain injury effectively.
WHITE PAPER DEVELOPMENT
The development of this white paper involved several distinct phases. First, prior to the summit, participants identified key components of a statewide infrastructure to support students with brain injury in the school setting. The group focused its efforts on systemic supports for students with ongoing disability following brain injury. (A second paper will present recommendations for systemic approaches to supporting students with mild TBI, commonly known as concussion.) The recommended promising practices fell into 5 broad categories: (1) screening, identification, and assessment; (2) hospital to school transition; (3) tracking of child's progress over time; (4) professional development for school personnel; and (5) data collection. This information was synthesized into a document for discussion. During the 2-day summit, the group refined the list of common practices across states, focusing on those with preliminary evidence of efficacy.
Next, the core authors drafted the white paper, including evidence of efficacy where available. The white paper was then reviewed both by the summit participants and by members of the National Collaborative on Children's Brain Injury, a multidisciplinary group of researchers, TBI advocacy group leaders, and governmental agency representatives focused on addressing the needs of children with brain injury (a list of Collaborative members and their affiliations is provided in the Supplemental Digital Content Table, available at: https://links.lww.com/JHTR/A83). The resulting white paper provides a framework for states to use when developing infrastructure to better support students who have ongoing disability in educational settings following brain injury. That framework is based on promising practices across states and emerging empirical evidence. In addition, recommendations for policy change and further research in childhood brain injury are provided.
BUILDING STATEWIDE INFRASTRUCTURE: KEY COMPONENTS
In 1990, TBI was added to federal special education law as an educational disability,1 and reporting on TBI became mandatory in 1992 under the Individuals with Disability Education Act (IDEA). Since then, local, regional, and state DOE personnel have attempted to design services to meet these students' needs. It is important to note that when brain injury was added as a disability category under IDEA, the US DOE chose to use the more narrow definition of TBI than the broader definition of acquired brain injury. Therefore, children with non-TBI are typically served under other categories such as “other health impaired.”
Screening, identification, and assessment
According to the Centers for Disease Control and Prevention, TBI is a leading cause of death and disability in children and youth; 35 136 children 0 to 14 years of age annually experience TBI significant enough to require hospitalization.2 Although the Centers for Disease Control and Prevention recognizes childhood TBI as a significant public health concern, the US DOE and most state DOEs consider TBI a “low-incidence” educational disability.
Approximately 145 000 children live with a TBI-related disability,3 but the number of students enrolled in the TBI category of special education is 24 878.4 The under- and misidentification of children with TBI in an educational setting present a significant obstacle to the provision of effective services.
Most states require that a student meet the following 2 criteria to qualify for TBI services under IDEA: (1) medical documentation of an event likely to have caused a TBI, and (2) assessment results that demonstrate that the student needs specially designed instruction to benefit from the educational environment. In addition, some states require that the student have a demonstrated change from preinjury performance to qualify for special education services under the category of TBI, which can pose an additional barrier, especially if the injury happened early in life.5 The US DOE does little to guide school systems in their efforts to identify or screen students for TBI. Similarly, little guidance is provided on how to establish eligibility for section 504 services (part of the Rehabilitation Act of 1973 that provides accommodations for students with disabilities who do not qualify for special education).6
Requiring medical documentation of TBI for students to be eligible for special education services or 504 plans can be a barrier to effective identification and service delivery. Students may lack documentation because they never sought medical attention following a TBI or, in the case of foster, adoptive, or migrant families, because medical documentation is unavailable.7 Furthermore, many children who sustain a TBI at a young age may not experience its full effects until later in their education when academic and behavioral expectations increase,8,9 and parents may no longer have access to medical documentation. In lieu of medical documentation, states should consider developing and implementing a screening, identification, and assessment protocol. Three critical elements of a protocol are (a) staff education, (b) screening and structured interview, and (c) focused assessments.
School personnel responsible for screening and assessment of students should have a foundational knowledge of TBI (eg, mechanisms of injury, short- and longer-term consequences, and intervention strategies). These staff can include school nurses, psychologists, speech pathologists, occupational therapists, social workers, and educators. This recommendation is based on the assumption that knowledgeable school staff are more likely to implement effective assessment procedures. However, research regarding the efficacy of staff training is needed.
Screening and structured interview
Evidence of reliability and validity has been reported for the following screening and structured interview tools developed to assess students suspected of having had a prior brain injury: The Brain Check Survey is a free tool for use with students (K-21)10 (www.cokidswithbraininjury.com). A parent or guardian completes the survey, which has 4 sections: (a) injury or illness; (b) behaviors that can affect learning; (c) symptoms; and (d) educational services.10 The Brain Injury Screening Questionnaire is a 3-part tool that can be completed by students or their parents.11–15 The training manual for the Brain Injury Screening Questionnaire provides the information needed to ensure its appropriate use in a variety of settings. Costs include training, the questionnaire itself, and scoring. The Ohio State University TBI Identification Method includes self-report questions and is based on the Centers for Disease Control and Prevention's framework to provide a systematic retrospective identification method. It uses a structured interview to elicit self- or proxy reports of TBI occurring over a person's lifetime.7,16 This tool is free, although there may be training costs. Further research is needed on screening measures' false negatives and positives, positive/negative predictive values, sensitivity, and specificity to distinguish TBI from disabilities with similar symptom profiles.
There are challenges in screening children and adolescents for TBI. First, there is considerable symptom overlap between TBI and other disabilities (eg, learning disabilities, social-emotional disabilities, executive function–related disabilities), and a screening measure may demonstrate adequate sensitivity but poor specificity with regard to TBI.17–19 Second, few rigorous experimental studies have examined TBI screening measures for children; most have focused on adults,7 substance abuse,20 and combat-related injury.18,21 Third, a screening instrument identifies potential concerns and should not be used in isolation to determine the presence of a TBI that requires intervention. Screening should be followed by a more detailed evaluation of the student's strengths and deficits to determine whether the self-reported TBI has resulted in functional impairment with adverse educational impact.
Although health screening and interview data can provide school personnel with evidence of a credible history of TBI, most states also require documentation of the educational impact of the injury. Appropriate individual assessment identifies a student's strengths and needs within the educational setting to inform instruction and school support decisions. Students with TBI have diverse and changing needs, making it critical that the assessment plan be tailored to the individual student. A comprehensive assessment can include evaluation of cognition, language, memory and concentration, sensory recognition and perception, academic achievement, social and emotional skills, and behavior.22,23 Test procedures might need to be modified to accommodate potential TBI sequelae such as mental fatigue, hypersensitivity to sound and light, or difficulty with memory or attention, requiring standardized and nonstandardized administration of cognitive and achievement tests. Appropriate interpretation of assessment results requires an understanding of the potential effects of TBI on students' learning and response patterns. This will require collaboration between healthcare and school professionals who are trained in differentiating the manifestations of a variety of medical and psychological conditions. In cases where school staff have limited expertise on the effect of TBI on school performance, schools should consider integrating neuropsychological experts into the assessment team.
In addition, educators should seek information from ecologically valid sources, such as parent and teacher behavior scales and interviews, curriculum-based assessment, and permanent product (such as a term paper, mathematics assignment, spelling test) evaluation.22,24 Finally, because students with TBI may experience both skill recovery and skill deterioration over time, assessment should be formative, with built-in progress monitoring, so that services can be appropriately modified as the student's needs change.
Hospital to school transition
Poor or nonexistent links between treating hospitals/medical professionals and schools contribute to the underidentification of students with TBI for educational support services.25–29 Although informing educators that a student has been treated for TBI does not guarantee that appropriate services will follow, failing to inform school authorities about a TBI dramatically decreases the likelihood that educational services will be offered or tailored to a student's specific needs.30 Strong collaboration among parents, healthcare providers, and educators is essential in designing effective educational programs for students with TBI. To facilitate better identification of students with TBI, linkages between school systems and primary care physicians' offices, emergency departments, inpatient hospitals, and post–acute care medical rehabilitation centers need to be strengthened.
Preliminary evaluation from a controlled trial of the Student Transition and re-Entry Program (STEP), a hospital-school transition model that targets students with moderate-severe TBI, suggests that students who receive systematic transition from hospital to school are more often identified for special education than those who do not receive systematic transition. Furthermore, these students receive more services, and their parents report greater satisfaction with the school and find a greater number of school staff helpful than students in the control group.31 These linkages are critical for tracking a child's recovery and ensuring that students are seamlessly linked to appropriate support services if they experience ongoing impairment. The following steps are recommended for a seamless transition from medical to school settings: (1) medical staff obtain a release from parents and notify an identified contact at the state DOE about the child; (2) the DOE notifies the school system about the child; and (3) the identified person within the school system contacts the school and the family to offer resources and support.31,32 Central to all 3 linkages is the presence of school-based professionals trained in TBI who can ensure that students receive the support necessary to succeed in school.
Tracking of child's progress over time
Challenges related to a TBI can emerge over subsequent stages of brain development33,34; therefore, educators who work with students with TBI must monitor student progress over time.35,36 Students who are identified and qualify for special education will be monitored as part of their individual education plan (IEP). However, depending on the stage of postinjury recovery, it might be necessary to review progress on IEP goals more frequently than the legally mandated annual review.36,37 It might also be necessary for school personnel to gather additional assessment information more frequently than the legally mandated triennial review. For students with injuries that do not initially cause significant disability but who are vulnerable to increasing disability over time, ongoing monitoring and referral for post–acute care medical rehabilitation services are critical.35,36 Within-district transitions (across grades, teachers, or schools) are occasions for careful monitoring, with the possibility of adding supports that were earlier judged unnecessary.38 For example, students with TBI might need additional supports when they transition to middle school, even if they have adapted well to elementary classrooms where demands for self-management and independent study are minimal.
Professional development for school personnel
Lack of awareness among educators regarding the potential school-related implications of TBI continues to be a key factor contributing to underidentification and poor outcomes for students with brain injury.39,40 Increasing awareness on a national level will require a comprehensive effort both to improve preservice teacher training programs and to provide in-service training to teachers already in classrooms. A recent survey of state directors of special education reported that a large proportion of current teachers felt that they had insufficient training in TBI.41 A substantial body of research on professional development in education could be used to design effective training for educators currently working with students with TBI. This research identifies recommendations for both training content and training methods.
Evidence-based training content
For many children with brain injury, cognitive interventions are routinely administered by teachers; however, the effectiveness of these interventions has not been tested using rigorous research methods.42 All professional development, both preservice and in-service, should include training content with demonstrated effectiveness in improving student outcomes. Although few interventions to promote positive educational outcomes have been tested specifically for children and youth with brain injury,43–45 evidence-based practices from research on children with other disability labels associated with similar functional challenges36 can be implemented for this population with minor modifications.46
Information dissemination and indirect training involving didactic or written presentation of material and verbal discussion about new strategies can improve educator awareness but are unlikely to result in changes in classroom practice.47–49 Teachers need hands-on practice with new skills and strategies to effectively integrate them into their teaching repertoire.47,50,51 Directly training new skills and training strategies, such as modeling, rehearsal, and feedback, increases the likelihood of generalization.52 Hands-on training for current educators can come in the form of consultation in the classroom. Effective professional development models must include consultation on implementing new skills in the instructional setting.53–56 Consultation in the natural setting is both the most challenging training to deliver and the most important in terms of changing teacher practices.36,57–59 The consultation must be of sufficient duration (7-8 sessions) to produce long-term sustained use of new strategies.60–62
Ongoing organizational support
Developing, implementing, and maintaining new skills over time and across settings require ongoing professional development support in context.63 Professional learning communities provide an opportunity for educators both to discuss and practice new skills and to consult with other practitioners. Ongoing readings and discussion improve understanding of educators' learning and teaching. Professional learning communities offer a structure within the school for the provision of situation-specific support to ensure that newly learned skills successfully transfer to the instructional setting.
The ultimate goal of statewide modifications in educational practices for students with TBI is improvement in student outcomes. Furthermore, the increased focus on accountability for student performance in today's schools64 dictates that systemic changes must lead to improved student outcomes. The development of educationally focused common data elements will allow for more rigorous research initiatives to be carried out. Table 1 presents recommended core measures to examine evidence of the effectiveness of changes in a state's educational infrastructure on TBI outcomes. Grades, attendance, state achievement test scores, eligibility for special education, office discipline referrals, and accommodations/modifications can be obtained from the school records of children with TBI after obtaining parental consent. Student and parent satisfaction with support services could be obtained through brief student and parent surveys or interviews (eg, Glang et al30). Graduation rates (indicator 1), dropout rates (indicator 2), and postsecondary student outcomes (indicator 14) could be obtained through IDEA-required Indicator databases already maintained by state DOEs: Part F §300.600, §300.604(a)(1) and (a)(3), (b)(2)(i) and (b)(2)(v), and (c)(2).1
INFRASTRUCTURE AND POLICY CONSIDERATIONS
States that implement the systemic components outlined here will benefit from the presence of the following 4 key elements:
- Leadership within DOE on TBI initiatives.
- Identified processes for referral and collaboration between medical/rehabilitation, and school systems.
- Policies that allow for identification and eligibility for educational supports in the absence of medical documentation.
- Funding and administrative support for personnel training.
Although federal funding has been dedicated to research and intervention for individuals with brain injury, most efforts have focused on adults. A Federal Interagency Committee on TBI has been formed to allow all federal agencies involved in TBI activities to work together to eliminate duplication of efforts and fill service gaps (LCDR Donelle McKenna, HRSA TBI Program Director at the National Collaborative Regarding Children's Brain Injury, Washington, DC, oral communication, March 21, 2012). The following recommendations provide a foundation for collaborative efforts to improve outcomes for children/youth with brain injury:
- In the next IDEA reauthorization, emphasize TBI eligibility determination as an educational process that depends on the effect of the injury on academic functioning, not on the severity of the injury or the presence of official medical documentation.
- Consider broadening the definition of brain injury to encompass both traumatic and nontraumatic causes of acquired brain injury. Acquired brain injury in children can result from a variety of causes that occur after birth (eg, TBI, infection, stroke, hypoxia). The supports required for all types of brain injury overlap considerably.42
- Develop systematic tracking and follow-up mechanisms to ensure that support is available if required for students with complicated mild to severe brain injury.
- Dedicate funds to developing common data elements in both medical and school settings for use in building a national pediatric TBI database.
- Develop requirements related to the TBI Act (Implementation) that would promote the implementation of the statewide infrastructure outlined in this white paper. Specifically, all states conducting needs assessments should be required to include children/youth in the assessment; advisory boards/councils must have representation from pediatric interests and experts, including healthcare, community, and school; and if the identified lead state agency is not the DOE, the specified lead must partner with its DOE.
- Under IDEA, include requirements and funding by the federal government for technical assistance for school personnel in childhood brain injury, similar to federal legislation for students who are deaf-blind, under IDEA and other funding priorities.
There is a lack of research related to each of the areas identified as critical components of an infrastructure for supporting students with brain injury in the educational setting: (1) screening, identification, and assessment; (2) hospital to school transition; (3) tracking of child's progress over time; (4) professional development for school personnel; and (5) data collection. For example, although it is recognized that seamless transition from hospital to school following brain injury leads to better outcomes, few measures have been developed to examine the effects of these important transitions. Similarly, there is a critical need for research on brain injury screening instruments to enhance their utility in school settings. Identification of a comprehensive research agenda regarding educational supports—with funding recommendations—for students with brain injury is a high priority of the National Collaborative on Children's Brain Injury. Possible future research questions include the following: Do children with IEPs have better academic and functional outcomes (degrees, jobs, quality of life) than children of comparable injury severity without IEPs; does having a TBI designation make a difference in terms of services and outcomes, (eg, how do IEPs using the TBI eligibility category differ from IEPs using alternative eligibility categories); what factors predict identification as TBI by the schools; and how does educator training regarding TBI relate to IEP designation and content?
Although this white paper can provide guidance on developing a statewide infrastructure to support students with TBI, it has limitations. The recommendations are limited to educational supports and do not include models of service delivery that could be implemented in community-based programs to support children with TBI. Similarly, the recommended components do not include approaches to support families of children with TBI. Given the well-documented relationship between family stress and child outcomes,65,66 developing models of support for families is critical. Future efforts should also include broader representation from states, including both US DOE and state policy makers.
SUMMARY AND FUTURE DIRECTIONS
More than 10 years ago, Ylvisaker and colleagues36 proposed a research and policy development agenda in the area of childhood TBI focused on improving statewide infrastructure and implementing evidence-based practices. Unfortunately, the picture has not greatly improved since then; students with TBI continue to be underserved and underidentified for educational supports.30 Furthermore, school systems continue to consider TBI a “low-incidence disability,” which, in turn, contributes to the chronic problem of insufficient teacher preparation and inadequate systems of support.36 An understanding of the full spectrum of TBI will require that school personnel receive training in the academic needs of and supports for these students. Given the general lack of awareness that continues to characterize the field, states need guidance and assistance to improve educational supports for students with TBI. Finally, because parent involvement in educational planning leads to more successful school experiences for students,67,68 parent and caregivers need information and support on being effective advocates for their children.69
This white paper has described the issues and gaps in educational supports for students with brain injury and highlighted key elements needed to begin to develop a statewide infrastructure to support these students. One of the primary gaps is the absence of research that identifies policies and practices that have been shown to improve outcomes for students with TBI. Since students cannot wait for this research to be conducted, we must now begin by instituting the best and most promising assessment, teacher training, and instructional practices and systematically documenting and studying their effect on student outcomes. The issues facing children with brain injury are vast and complex; therefore, the response and approach to support them need to be a comprehensive, sustained, state-by-state, and national effort.
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