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Children and Adolescents with Brain Injury Ronald C. Savage, Ed.D. INTRODUCTION It is called head injury, traumatic brain injury, and acquired brain injury. But it all essentially means the same thing-- a person has sustained an injury to his/her brain that may change his/her life forever. In fact, the largest killer and disabler of our children is not AIDS nor cancer, it is brain injuries. When one considers the schoolage population of survivors, those survivors under age 21 outnumber all other ages combined (NHIF, 1994). Yet, children and adolescents with brain injuries have not received the same recognition nor services as have adults with brain injuries. Each year one million youngsters are taken into emergency rooms with "traumatic brain injuries" resulting from motor vehicle collisions, falls, sports, and abuse or with "nontraumatic brain injuries" resulting from anoxic injuries (near drowning, strangulation, choking, etc.), infections (encephalitis, meningitis), tumors, strokes and other vascular accidents, neurotoxic poisonings, and metabolic disorders (insulin shock, liver and kidney disease). It is estimated that brain injuries to children between birth and 19 years of age annually result in:
In addition, age is a strong predictor of the cause of brain injury in children:
We used to believe that children were wonderfully resilient little beings who could "bounce back" after even severe trauma. Now we know that children are just as vulnerable as adults, only sometimes it takes much longer for the effects of trauma to be seen in a child since children's brains are still developing. Preschoolers with injuries to their frontal lobes often look fine within a few weeks or months. However, as they get older and their brains mature, that part of the brain previously damaged may not work as well as it should. Thus, when a child's brain is injured it can have long-term devastating effects on the child and his/her family. Too often children who sustain a brain injury early in life may look "well" at that moment in time, but as the child gets older more serious cognitive and behavioral problems emerge. PEDIATRIC EMERGENCY/CRITICAL CARE SYSTEMS Recently, through a series of Emergency Medical Services for Children (EMSC) demonstration grants, the care of critically ill and injured children has been improved in many states. Prior to this it was not uncommon for children to be treated by medical specialists with little training in pediatrics or for children not to be treated in Level I trauma care centers. A study by EMSC stated in A Report to the Nation (1990) that the majority of infants, children, and adolescents in the United States who might benefit from pediatric critical care services do not receive them. Presently, a new national movement is establishing sophisticated and designated trauma services to care for children across the country and to develop a system of coordinated services from hospital to home for all children. Unfortunately, many of these children are not referred to rehabilitation and/or special education services. The National Pediatric Trauma Registry (Research and Training Center, Tufts University) reported that out of 37,000 pediatric head traumas recorded in the registry from 67 trauma centers less than half were of these admissions were discharged to rehabilitation services and only 2% were referred to special education services despite the recognition of noted cognitive, behavioral, and/or motor deficits in many of these children. Recently, a task force of physicians and heath care professionals through Emergency Medical Services for Children (EMSC) began developing discharge guide lines that emergency and trauma care specialists can use to identify appropriate referrals of children between systems of care (e.g., rehabilitation, special education, outpatient services). In addition, even for those children who are referred for rehabilitation services, few specialized facilities exist that are dedicated to pediatrics. Hence, children often receive services in "watered down" adult programs by adulttrained therapists. Recently, the Commission on the Accreditation of Rehabilitation Facilities (CARF) created program standards for facilities serving children and their families. Also, in 1990, Public Law 101-476: Individuals with Disabilities Education Act, added traumatic brain injury as a specific category of special needs students. Thus, we now have the beginnings of a national effort to improve the health of children who sustain lifethreatening injuries or illnesses. These efforts will focus on developing coordinated medical care services, educating professionals who serve children, collect data to identify needs, develop continuous quality improvement methodology, create prevention programs, expand rehabilitation and community services, and eliminate financial barriers to health care. DEFINING BRAIN INJURY Ultimately, schools end up being the largest provider of services to children with brain injuries (Savage, 1988; Ylvisaker, 1991). Public Law 101476: Individuals with Disabilities Education Act (IDEA) includes "traumatic brain injury" as a category for special education services. New initiatives in states across the country are addressing the training needs of educators to better understand the impact of brain injuries on students. Schools are becoming increasingly involved in working with hospitals and rehabilitation facilities to help children with brain injuries reenter school and plan appropriate educational services. In addition, families and schools recognize the longterm residential, vocational, and social needs of children once they leave school and home and enter the community. Historically, in our health care and educational systems, professionals have had a difficult time defining "brain injury" in a way that best identifies those schoolage children needing rehabilitation and/or special education services. Physicians, psychologists, and educators have often confused themselves with incomplete terms that attempted to describe a person's brain that is not working the way we think it should work, especially after an injury or illness. We have used terms like congenital brain damage, head injury, traumatic brain injury, organic brain damage, minimal brain dysfunction, acquired brain injury, and a host of others to define the "injured brain" without consistency in our definitions (Savage, 1991). As part of the national Americans with Disabilities Act, in October 1990, the Individuals with Disabilities Education Act (Public Law 101476) was authorized to include "traumatic brain injury" as a disability category for those students requiring special education services. This disability category attempted to better identify and classify a distinct group of schoolage children so that professionals can better plan their educational programs. Traumatic brain injury under this law is defined as follows: "Traumatic brain injury" means 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; problemsolving; 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 brain injuries induced by birth trauma. (Individuals with Disabilities Education Act, 1991) Public Law 101476 now enables school systems to better identify the needs of children with traumatic brain injury and not to misclassify them as mentally retarded, learning disabled, behaviorally disturbed, or any other special education category. Schools and teachers across this country have been and are still receiving training about traumatic brain injury and the needs of these students in order to better provide special education services. Many states have set up interdisciplinary teams to develop programs to help students with traumatic brain injuries in their ongoing recovery. Unfortunately, many children with brain injuries acquired from "internal" occurrences do not meet the strict definitional requirements for traumatic brain injury in all states. Children who have had brain infections (e.g., encephalitis, meningitis), strokes and other vascular accidents, anoxic injuries caused a reduction of oxygen to the brain, brain tumors, neurotoxic poisonings, or metabolic disorders (e.g., insulin shock, liver and kidney disease) are often excluded from the present definition of traumatic brain injury since their injuries were not the result of an "external physical force." Yet, as many educators note, the learning needs of these students are similar to the needs of other students with brain injuries even though their course of recoveries may differ. The educational needs of children with brain injuries generally cluster about three major domains: the cognitive domain, the psychosocial domain, and the sensorimotor (physical) domain. In medicine, the terms mild, moderate and severe traumatic brain injuries are commonly used to describe the spectrum of head injuries even though no consistent medical definition of these terms exists in present medical literature. Various scales to classify the degree of injury severity caused by head trauma often measure the length of time a person is unconscious, however, many of these scales were normed on adult survivors of traumatic brain injury and not on children. Children often do not experience a loss of consciousness after even a severe blow to the head, nor are their presenting problems as obvious as those similar problems seen in adults (Lehr, 1990). In addition, several major studies of children with traumatic brain injury (Eichelberger et al., 1990; Klonoff et al., 1993; Greenspan and MacKenzie, 1994) have shown that even a socalled "mild" head injury for a child can create significant learning and behavior problems. Thus, educators are cautioned that the present medical definitions of mild, moderate and severe brain injury may not be the best indicators of outcome or potential for school related problems. Children with mild traumatic brain injuries, for example, may experience problems months or even years later that may be just as disabling as those problems experienced by students with more severe injuries (Savage, 1994). EDUCATION IMPLICATIONS In educational terms, our brain helps us to think and communicate, have feelings and actions, and move about the environment. When a child sustains a brain injury, these three major behaviors may become altered, changed, or lost forever. Thus, children may experience problems and need help in three major areas: COGNITIVE NEEDS MAY INVOLVE:
PSYCHOSOCIAL NEEDS MAY INCLUDE:
SENSORIMOTOR NEEDS MAY INCLUDE:
For many children with traumatic brain injuries, these needs will be challenging to meet unless we consider utilizing coordinated, interdisciplinary planning involving all parties: the health care providers, the educators, the family and child, and the community. RETURNING TO SCHOOL The return to school can be devastating if the health care facility (hospital or rehabilitation center) and the child's home school do not interact as soon as possible and as frequently as possible (Carter and Savage, 1988; Ylvisaker et al., 1991; Begali, 1992; Mira et al., 1992; Lash, 1992). The inclusion of traumatic brain injury in our special education laws has helped to improve our understanding of the medical and educational needs of children and adolescents. Hence, as soon as a child is admitted to a health care facility (hospital and/or rehabilitation center), the school reintegration and transition process needs to start. Hospital and/or rehabilitation professionals need to immediately inform the school that they are presently caring for one of their students and to have the family and/or attending physician formerly request that the school come in and evaluate the child. Under Public Law 101476 any of three individuals, the parent (or guardian), the child's physician, or one the student's teachers, can refer a student for an evaluation to determine the need for special education services (i.e., the child's social worker or discharge planner in the hospital cannot). This evaluation is the important first step in initiating the special education process for identification and classification purposes (i.e., does this child need special education services and how should he/she best be classified). Unfortunately, many children are not referred to the school system for evaluation and are merely discharged back to school with little if any support services in place (Savage and Wolcott, 1994; Blosser and DePompei, 1994). If the attending physician acts promptly and immediately refers the child for a special education evaluation, the schoolbased special educators or psychologists can then visit the child in the health care facility prior to discharge and decide whether or not this child is going to need special education services and how to best coordinate these services with the hospital or rehabilitation facility. (Savage, 1991; Ylvisaker et al., 1991; Savage and Wolcott, 1994, Blosser and DePompei, 1994). Once the school has determined that the child is in need of special education services and has appropriately identified the child or adolescent as a "student with traumatic brain injury," then the school can begin to develop the Individual Education Plan (IEP). The IEP is essentially the contract between the student's family and the school system designating the kinds and extent of services the student needs (Carter and Savage, 1988; Ylvisaker et al., 1991). In the case of those children whose traumatic brain injuries are mild, fullfledged special education programming may not be immediately necessary. Those students may only need to be monitored or have their schedules modified for a period of time to insure that any neurologic sequela has resolved. The school nurse, classroom teachers, and family can then alert the child's pediatrician and/or neuropsychologist, for example, of any persistent problems the student may experience. For children with more severe injuries, both medical and educational professionals need to recognize that school reintegration is best facilitated by coordinated systems of care, rather than merely passing the child from one system to another. Developing communication protocols between health care facilities, school systems, and families will help eliminate the "cracks" between systems into which many students and their families fall victim. Thus, the initial IEP should be a "joint venture" among the health care facility, the school, and the family. This initial IEP can reflect the cognitive, psychosocial, and neuromotor needs of the student from a functionallybased and holistic approach that will enable the student to become increasingly more involved in his school, family, and community as he/she continues to recover. In addition, a student's IEP can even designate the involvement of vocational rehabilitation and community transition services by outside state and local agencies to insure the continuity of services prior to the adolescent graduating from the public school system. For example, consider the adolescent with a brain injury who is back in school, but is experiencing difficulty remembering historical dates and facts in his social studies class. This student may need his work area in the classroom restructured to enhance attention and concentration and use specific memory strategies to help store and retrieve information. Therapeutic interventions that worked well in the rehabilitation setting can be carried over into the school setting and such strategies need to be shared with the family to be continued at home. Collaborative planning that starts early in the rehabilitation setting and is extended into school helps merge the health care and school systems with the family into a unified, ongoing program. Again, the IEP is driven by federal mandate and state laws and is the best vehicle we have to negotiate and agree to service delivery models that are in the best interests of the student. An important component in the IEP process is the duration and timeliness of the educational plan. Many IEPs are written to serve other children with special needs (i.e., students with learning disabilities, behavioral/emotional problems, developmental disabilities, etc.) through an entire school year. With many students with traumatic brain injuries their needs change dramatically as they continue to recover. Therefore, it is necessary to create IEPs that are not bound by artificial timebarriers. Writing an IEP for a student with a brain injury and not reevaluating the student or the IEP for an entire academic year can have grave consequences. Students and their individual education plans need to be reviewed frequently to coincide with changes in recovery. Children and adolescents with traumatic brain injuries, unlike other students with diagnosed developmental or learning disabilities, often continue to make remarkable changes in the first year following the injury. Thus, the IEP needs to incorporate frequent review times to monitor progress or potential problems. PLANNING THE ACADEMIC PROGRAM Health care facilities and school systems that have connected their services have also learned that "school reentry" in not a one time event in the child's life. Returning to school is a series of transitions from the moment the student is injured until they graduate school and beyond, much like a chain has a series of links tying itself together from beginning to end. Unfortunately, many health care facilities may think that once the child is "discharged" their job is completed. Schools may feel that once the child has been identified and classified the student's needs have been met. And parents may feel that once their son or daughter is back home and in school that life will return to normal. Such misconceptions have given many professionals and family members false hopes the all is well and life goes on as before. The reality is that we have a child or an adolescent whose brain in still developing and the impact of the injury to that individual's brain will most likely continue to show up even years after the injury itself (Klonoff et al., 1993; Eslinger et al., 1992; Allison, 1992; Levin et al., 1991; Price et al., 1990). Thus, over time, as school and life become even more challenging for the student, the demands become greater and his/her brain must try to compensate for areas that were previously damaged. For example, a child who seriously damages their frontal lobes may function fine in their early years growing up only to experience emotional and behavioral challenges in their teenage years. Therefore, when medical and educational professionals speak about "the return to school" it needs to be a carefully coordinated and thoughtful plan that visualizes the needs of the child or adolescent over their entire school career and on into adulthood. For example, in the beginnings of adolescence, young people are confronted with ever increasing cognitive and social demands, more complex academic curricula with as many as 810 teachers to work with and a host of physiological and psychological changes. Issues of physical maturation and attractiveness, sexuality, selfidentity, independence, confidence, and selfworth figure predominantly in their evolving lives. Adolescents are "on the go" driving cars and going out socially. The adolescent with a brain injury may experience great difficulty in any of these areas at a time when they also need to be able to think logically, make adultlike decisions, process vast amounts of information, and solve complex problems. This period of development can leave many adolescents with brain injuries "standing in the dust" of their peers and create insurmountable feelings regarding their losses, inabilities, and hope for a future outside of school. Such losses can trigger anger, depression, inappropriate behaviors and lead to substance abuse, suicidal thoughts, and academic failure (Lehr and Savage, 1990). Hence, classrooms, curricula, and teacher responsibilities may need to be reconfigured to meet the student's unique learning needs, counseling supports may need to be set up to help the student discuss their feelings and learn ways to accommodate socially, and additional family/community services may need to be increased to insure long term success. For example, students may need to "check in" with the special educator each morning to make sure he/she has the right materials, books, etc. for classes that day. Later the student may need to "check out" with the teacher regarding homework, upcoming tests, and any special assignments. The student may need additional speech, physical, and/or occupational therapies integrated into their academic schedule through the IEP rather than pulling them out of school for traditional outpatient services. Classroom teachers may need to modify the academic work load by providing study guides, giving additional time for assignments, or using specific cognitive and behavioral strategies to enable the student to learn better. Such accommodations can enhance the adolescent's recovery and include them it school and community activities to the fullest. Often neglected is the issue of post school experiences (Wolcott and Lash, 1993; Krankowski, 1994). The cooperative planning of where an individual may work, where they may live, how they will be included in the community needs to begin in the early adolescent years. The involvement of vocational rehabilitation services, independent living centers, and post secondary education experiences are part of the overall series of transitions (Savage, 1987; Wolcott and Lash, 1993). Many young adults with traumatic brain injuries end up living closet lives at home after they have "graduated" from school. As health care centers recognize the need to connect their services with the school, so do schools need to connect their services with the outside world. Schools can provide very supportive communitylike environments for the student to succeed, but post school experiences, if not planned for, can become a nightmare. Collaboration with area vocational services, independent living centers, communitybased advocacy agencies, and other support systems need to be involved in the student's educational program prior to graduation in order to establish a coordinated transition plan from school to community. SUMMARY With the establishment of pediatric critical care systems, new referral guidelines, and the inclusion of the category traumatic brain injury in Public Law 101476, health care providers, schools, and families have an opportunity to better work together to provide a continuum of services specific to the needs of the child or adolescent with a brain injury. Early referral by the health care providers and the collaborative development of Individual Education Plans will enable professionals to blend their services and provide families with a vehicle to insure service delivery for their children. |
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