Returning to School Following Brain Injury:
Legislation to Know and Issues to Avoid
Joanne M. McGee, Ph.D.
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Critical Care and Rehabilitation

During the last decade, acute care hospitals and rehabilitation facilities in many states have improved services for critically ill and injured children and have provided specialized services to children and adolescents with brain injury. These changes have stemmed primarily from the Emergency Medical Services for Children Demonstration Grants (Savage & Wolcott, 1995). Specialized pediatric trauma services are being established nationwide and systems are being developed to coordinate services from the hospital to home and school. The Commission on Accreditation of Rehabilitation Facilities (CARF) has developed standards for programs offering services to children and adolescents with brain injury, emphasizing community integration and family involvement in rehabilitation (Savage & Wolcott, 1995).

Despite these advances, research indicates that only forty-two percent of children with four or more impairments resulting from TBI are discharged from acute medical treatment centers to rehabilitation. Most (forty-seven per- cent) are discharged to home and return to school without a transition period in rehabilitation (DiScala, Osberg, Gans, Chin, & Grant, 1991). Clearly, this places significant strain on the child with TBI, educators, and the family.

Barriers to the provision of rehabilitation services for children and adolescents with TBI stem from numerous factors. Rehabilitation services have developed within the private sector and continue to be lacking in the public sector. Insurance plans often do not include coverage for the extensive rehabilitation services required after a brain injury. Cost parameters established by managed care organizations sometimes result in a reduction of qualified providers and inadequate service delivery such as premature discharge and inappropriate community placements (DePompei & Blosser, 1997). Finally, as Savage and Wolcott (1995) point out, there are relatively few specialized rehabilitation facilities that are dedicated to pediatrics; children may receive services that were originally developed in adult programs.

Although they are slow to develop and continue to be inadequate, changes in policy have been somewhat effective in removing some of the barriers to needed care. When Medicaid was first introduced in 1965, the only long-term care services covered were institutionally based. Since 1981, states have been allowed to develop “waivers” of the Medicaid rules in order to provide long-term home and community based services to people who would be at risk for institutionalization. Further, waivers provide for more relaxed income eligibility. At present, more than half the states have implemented a Medicaid waiver to provide services for individuals with TBI. The focus of most waivers is for time-limited rehabilitation at the acute stage or for long-term support after rehabilitation and as an alternative to nursing home care (Spearman, Stamm, Rosen, Kayala, Zillinger, Breese, & Wargo, 2001).

Returning to School
As mentioned, approximately 85 percent of brain injuries are mild. These injuries may or may not affect a student’s behavior or ability to learn after a recovery period of 6-12 months following injury. However, the 15 percent of students with moderate to severe injuries are at risk for academic, behavioral and social problems at school. Without doubt, “schools end up being the largest provider of services to children with brain injuries” (Savage & Wolcott, 1995).

Clearly, for many students who have experienced TBI, special accommodations and services in the educational setting are required. Ewing-Cobbs and colleagues reported that, two years after a TBI, 79% of the severely injured students had either failed a grade or received special education assistance (Ewing-Cobbs, Fletcher, Levin, Iovino, & Miner, 1998).

Federal Guidelines
Guidelines under federal law can be invoked in planning for the provision of educational services. Policies established under the Individuals with Disabilities Education Act, Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act are
summarized below.

Public Law 101-476: Individuals with Disabilities Education Act (IDEA)
Public Law 101-476 (IDEA) was a 1990 reauthorization of The Education of the Handicapped Act (Public Law 94-142) which was passed by Congress in 1975. The Education of the Handicapped Act was a landmark piece of legislation that made federal funds available to states and local schools to assist in the education of students with disabilities. The law specifically instructed the state to provide needed educational services to persons with disabilities. Special education and related services were to be provided at public expense – free to the family or caregiver. The services were created to meet the standards of the state education agency and were to be available from preschool through secondary levels. Finally, the program had to be personalized to meet the unique needs of the individual student (Nauert, 2002).

The law required that every qualified student have an individual education program (IEP). An IEP is a written account of the student’s unique educational needs. It includes a statement regarding 1) the student’s current level of performance, 2) educational goals, 3) specific services to be provided, 4) the extent the student will be able to participate in regular educational programs, 5) the date services are to begin and expected length of services, and 6) schedules (at least annually) and procedures for determining whether objectives have been achieved (Nauert, 2002).

Public Law 94-142 supported the right of parents (or caregivers) to challenge any decisions related to identification, evaluation, and placement of their children. The law also emphasized that the student was to receive appropriate services, while not being restricted from interactions with students without disabilities and the full range of educational alternatives (Nauert, 2002). Although specific categories of disability were acknowledged under Public Law 94-142 (e.g., learning disabled, emotionally disturbed), TBI was not listed as a specific diagnostic category.

The Education of the Handicapped Act was reauthorized in 1990 (Public Law 101-476) and the name of the law changed to Individuals with Disabilities Education Act (IDEA). The amendments expanded many of the law’s programs and created new ones (Nauert, 2002).

IDEA was considered to be an important piece of legislation for children with TBI as the act included TBI as a special education diagnostic category. This category definition served as a catalyst for states to provide training programs for teachers. Consequently, educators’ awareness of TBI has increased and students now have greater access to appropriate educational services (Bigler, Clark & Farmer, 1997; DePompei & Blosser, 1997).

Section 504
In 1973, Congress amended the Rehabilitation Act (referred to as Section 504) to prevent any state or local program that receives federal funds from discrimination against program beneficiaries on the basis of handicap. The Handicapped Children’s Protection Act of 1986 clarified the regulations as they applied to special education (Jacob-Timm & Hartshorne, 1998; Martin, 1988).

Section 504 requirements apply to anyone with a mental or physical condition that adversely affects education, which clearly encompasses individuals with a TBI. A student must be considered for an evaluation under Section 504 when there is reason to believe there is a handicapping condition. The evaluation may include medical evaluations at no cost to the parents (Jacob-Timm & Hartshorne, 1998; Martin, 1988).

According to Section 504, students with disabilities from ages 3 through 21 are to be afforded equal opportunities to obtain educational benefit and to have equal access to educational programs and activities as those students without a disability (e.g., a child with handicap would not be denied access to a computer lab due to a concern that he/she would damage the equipment) (Martin, 1988). The broad definition of handicapped under Section 504 may include many students who do not qualify as disabled under IDEA (Jacob-Timm & Hartshorne, 1998). All children who qualify for IDEA, however, are protected under Section 504 as well. Thus, while Section 504 does not specifically mention TBI, it addresses handicaps in a general sense. The school district is expected to provide, through general education, services to address specific learning needs (Martin, 1988; Silver & Oakland, 1997).

Differences exist between IDEA and Section 504, including purpose, funding, eligibility, and school responsibilities to students. Unlike IDEA, a written educational plan (IEP) is not required under Section 504, however, there must be a written “accommodation plan” which describes what accommodations are necessary for the student to progress. Examples may include repeating and simplifying instructions, using visual as well as verbal instructions, using behavioral management techniques, and providing a structured learning environment. Other accommodations may include reducing class size and use of one-on-one tutorials and classroom aides. While federal funds are not provided to schools under Section 504, funding may be removed from a district if there is noncompliance with Section 504. Under Section 504, “appropriate education” is more broadly defined than under IDEA. Educational services can be provided in the regular education classroom, regular class with supplementary services, or through special education and related services. The Office of Civil Rights policy statements indicate that school districts may use IDEA-supported specialists and services to ensure the provision of appropriate accommodations for children who qualify only under Section 504. Finally, the district assumes the responsibility of ensuring that 504 rights are afforded even when the student is placed in a program that is not operated by the school district (Jacob-Timm & Hartshorne, 1998).

Americans With Disabilities
Act of 1990 (ADA)
ADA is federal anti-discrimination legislation that “guarantees equal opportunity to individuals with disabilities in employment, public services, transportation, state and local government services, and telecommunications” (Jacob-Timm & Hartshorne, 1998). Title II, Subtitle A of the law pertains to public schools. As in Section 504, schools are prohibited from discriminating on the basis of disability; they are prohibited from excluding students with disabilities from participation in or benefiting from school services, programs, or activities. Like 504, ADA requires that reasonable accommodations be made for students with disabilities and that services and activities are provided in the most integrated setting possible to meet the needs of the student with disabilities. Another important aspect of the ADA is that it expands opportunities for students with disabilities in transition to post-school activities. ADA is not to be construed as a lesser standard than Section 504 and at times requires more than Section 504 in terms of the district’s obligation to students with disabilities. ADA emphasizes the removal of architectural barriers as a top priority. The Office of Civil Rights and the U.S. Department of Education are responsible for enforcing ADA as it applies to public schools (Jacob-Timm & Hartshorne, 1998).

Legal Entitlements as Related to Brain Injury
One additional provision under IDEA is the entitlement to educational services through the age of 21 (or through the age of 22 in some states). Since many children with handicaps learn more slowly, extra time and education better equip the student to transition to adult life. TBI frequently occurs during the teen-age years, so an adolescent may sustain a TBI as they near high school graduation. It is important to realize that they may be eligible to receive special education services for several more years. The services would be tailored to the unique needs of the student and may include, for example, retraining in academics, physical therapy, training in independent living skills, prevocational training, job coaching, and counseling. While needed services may not be available through the local school district, the district may arrange for and provide transportation to a location where the services are provided (Martin, 1988).

Educational services may be required before the student is able to return to school. Hospital-bound and home-bound educational services are to be provided by the local school district according to IDEA. The student may need a full day of programming, provided by an educator with specialized training in brain injury. Materials may need to be modified to meet the student’s needs. Related therapies and services such as occupational and physical therapies may accompany instructional services such as academic instruction and speech
therapy (Martin, 1988).

IDEA requires that goals are set annually at a minimum. Goals include developmental, physical, social, emotional, and vocational areas, in addition to academic and cognitive goals. A student with traumatic brain injury usually makes rapid progress in the months following the injury and the areas in which change occurs may be unpredictable. Therefore, it is well-understood that it is necessary to review the IEP goals and objectives on a more frequent basis for children with TBI than would be needed for children with other disabilities (Martin, 1988).

Entitlement is for appropriate educational services, even if the services are needed beyond the six hours of instructional time per school day. Services may be required on weekends and throughout the summer if the lack of services would result in deterioration. At times, it is necessary to place the student in a residential facility in order to receive educational benefit. Under these circumstances, the costs (including room and board) are a public expense under IDEA. However, the goal in any such placement is to assist the student in reintegrating into a less restrictive environment and hopefully returning to school (Martin, 1988).

Finally, colleges and universities have recognized their requirement under the Americans with Disabilities Act to provide accommodations for individuals with disabilities who seek to obtain higher education. Campus Offices of Students with Disabilities now provide support for students with brain injury (DePompei & Blosser, 1997).

While beyond the scope of this article, additional services may be available as the young adult transitions from the school to the vocational setting. Vocational rehabilitation services are available, as well as, additional community supports. The reader is encouraged to contact local advocacy organizations to identify specific programs in each geographic area.

Identification Issues in the School Setting
The TBI Amendments of 1996 and their subsequent reauthorization in 2000 (Title XIII of the Children’s Health Act of 2000) have promoted the identification of brain injury and communication between service providers. Government sponsored projects are underway to help “identify people with traumatic brain injury, remove barriers to services and supports, and educate and inform people with traumatic brain injury and their families, service providers, policy makers and the public” (Berube, 2001). For example, in some states, hospital discharge summary forms are being revised to include specific data about brain injury. Educational materials are being developed and distributed to professionals in public service, as well as family members (Texas Brain Injury Advisory Council, 2003). Unfortunately, despite these changes, significant problems persist in the continuity of care for children with brain injury. Too often a child receives medical attention and is released from the emergency room, but the injury is not reported to the school. Obviously, with more serious injuries, the school is more likely to be aware of the child’s hospitalization (Hibbard, Gordon, Martin, Raskin, & Brown, 2001).

Data collected by the National Pediatric Trauma Registry from 1994 to 2001 indicated that of 43,270 children admitted to trauma centers, approximately fifteen percent experienced a loss of consciousness, suggesting injury to the brain. However, only two percent of those with suggested brain injuries were referred for special education services. In one state, 863 students were served in special education under the eligibility category of TBI during 1999, while an estimated 2,000 of the state’s children are permanently disabled by TBI each year (“How Brain Injuries Can Affect a Child,” 2002). This discrepancy suggests that children with TBI were under-reported in the state’s special education system (Clark, Canu, Davis, Kuchar, Plotts, & McGee, 2003). As Ylvisaker and colleagues point out, “epidemiological data in the medical literature has failed to yield a realistic estimate of the needs of this group of students within the educational system” (Ylvisaker et al., 2001).

Delay in state and district implementation of the 1990 IDEA legislation regarding TBI may be a contributing factor to the difficulties with appropriate classification and remediation. In the mid-1990’s, 16 of 34 states surveyed by Katsiyannis and Conderman were still in the process of writing their guidelines for TBI eligibility (as cited in Bigler et al., 1997). As late as 2000, TBI was not offered as a category for special education eligibility in all districts (Clark et al., 2003).

The problem of identification and acquiring needed services is further compounded by a lack of coordination of services. Out of necessity, families often serve as the “manager of services” as the child transitions from hospital to home and school, a complex task for which most family members have little or no preparation. As Martin (1988) points out:

The vast majority of TBI students would presumably have not been in special education prior to the trauma causing their injury. Their entitlement to special services, their parents’ role in securing those services, and the school district’s perception of them as disabled will all be new and very sudden. In this writer’s experience, the parents of a TBI student are much less likely to be able to advocate effectively for their youngster’s special educational needs than the parents of a child born with disabilities who have learned over time how to work with the educational system.

Anticipating recovery, there may be a reluctance of regular education personnel, parents, and even the student with TBI to recognize a need for special education. This approach may become quite destructive for the child if his/her disability prevents successful educational performance. While waiting for a hopeful recovery, the regular education setting may be very unpleasant for the child with TBI and opportunities for personalized educational programming are passed up (Martin, 1988).

Despite a fairly extensive research base on the nature, effects, and outcomes of TBI among children, students with TBI are often misclassified in the special education system as having an emotional disturbance, due to similarities in overt behaviors (Hibbard et al., 2001). These students may receive services that do not address their specific needs, since the underlying issues associated with TBI differ from those associated with emotional disturbances.

Even when the school is aware of the injury, the long-term consequences of the injury may not be immediately apparent and teachers may fail to attribute the delayed presentation of problems to the TBI. Therefore, services needed to address the consequences of brain injury may not be sought (Hibbard et al., 2001).

In the United States, TBI is the leading cause of death and disability in children and adolescents (Brain Injury Association of America, n.d.), however, a lack of identification in the school setting has resulted in low-incidence status. While specialists in TBI may be available to provide services to the local district on a consultation basis, the classroom teacher (including special education teachers) may have little or no training in intervention and may not be aware of educational strategies that are effective with this population (Clark et al., 2003; DePompei & Blosser, 1997). Costly consequences include the development of adversarial relationships between educational professionals and parents; the child may experience frustration and may deteriorate behaviorally and emotionally; and alternative educational options may be considered (e.g., home-schooling or private specialty rehabilitation/school settings). As more children with TBI are identified in the educational setting, educator awareness and training will hopefully become more routine.

Conclusions
Care for children and adolescents with brain injury requires a collaborative effort between the family and medical, educational, vocational, social, and community service providers. As DePompei and Blosser (1997) point out, “reentry to school is only one point on a continuum of services for children that begins with paramedics on emergency service teams and ends somewhere in lifelong community living after the child becomes an adult.”

Efforts have been made at the national level to improve the health of children with life-threatening injuries or illness. These efforts have resulted in improvements in the coordination of services, dissemination of information, and prevention (Savage & Wolcott, 1995). However, continued progress is needed to adequately meet the needs of children with TBI and their families.

While medical and educational services may be available to meet the needs of the child with brain injury, only preliminary efforts are being made to provide a systematic transition from the medical/rehabilitation setting to the school and home settings. Clearly, the lack of systematic transition has created a barrier to the provision of services for countless children and adolescents with TBI who either have not been identified for services within the school setting or who have been misclassified and are receiving inappropriate or inadequate services. Continued long-term effort will be required to refine the communication and referral process for children in these settings.

Despite the persistent challenges, children with disabilities, including TBI, are living in a time of advancement in disability policy initiatives that promote inclusion and prohibit discrimination. Academic expectations for children with disabilities have been raised and collaboration in the goal-setting process has been encouraged between educational and health professionals, families, and the child. These changes, along with access to technology, can allow more children with TBI to participate with their peers, both in school and in the community rather than being placed in separate settings.

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