Helping Families Navigate the School System to Obtain Appropriate Services After Brain Injury

When a child sustains an acquired brain injury (ABI), parents and families are thrown into a new and unfamiliar world. They are forced to deal with complex medical systems while their child is hospitalized and receiving rehabilitation care. If their child has not required special education services in school prior to the injury, they will now be dealing with a system of support that is unknown to them. Navigating a new system of support and understanding school services is a daunting process. Professionals who work with these parents and caregivers are in a primary position to help educate and direct them through some difficult first steps of the process. To do this effectively and efficiently, professionals should have an understanding of the services available for students with ABI in the education setting and how one goes about obtaining those services.

Communication and Collaboration are Essential

Historically, communication between hospitals and schools has been weak, with both systems struggling to understand one another’s perspectives and procedures. Research has shown that students hospitalized with brain injury who had documented cognitive and behavior impairments as a result, were rarely recommended by medical staff for referral to special education at the time of discharge (DiScala & Savage, 2003). This has resulted in under-identification and limited referrals for students with brain injury for educational support services. Developing policies and procedures that promote effective communication and discharge planning is crucial in ensuring that students will receive needed supports when they return to school following brain injury (Glang et al., 2008).

Equally important is the ongoing communication required once the student is discharged from the inpatient setting and re-enters the school setting. Providing school personnel with updated information regarding any medical or rehabilitation services will help ensure the student’s school records are up-to-date, and any needed adjustments to educational programming are made. Frequent communication between those delivering outpatient and school-based therapies is essential to guarantee coordinated and effective service delivery.

Additionally, the degree of collaboration between the child’s parents and educators has been found to be a critical factor influencing school success for children (Sharp, Brye, Llewellyn, & Cusick, 2006). Professionals can help families by talking to them about the importance of being a proactive advocate for their child, developing a non-adversarial working relationship with educators, and establishing a system of ongoing communication.

First point of contact after ABI

The student’s school should be informed of the ABI immediately so that preparation can begin for the return to school. If the child is hospitalized, the hospital social worker can assist the family in contacting the student’s school to determine how support can be initiated and provided. An appropriate school staff member (school psychologist, school nurse, school counselor) should be designated as the point person in order to obtain all records (medical, neuropsychological, rehabilitation therapies, etc.) with parent’s written consent. Ideally, this person should have training in, or have access to, a brain injury education specialist (a special educator who has obtained certification/training in TBI and/or is certified by the Academy of Certified Brain Injury Specialists through the Brain Injury Association of America.) Upon discharge from the hospital, the hospital teacher and/or treating therapists should inform the school representative about student’s current functioning levels. Best practice indicates school personnel visit the child while an inpatient to observe therapies and attend the discharge meeting to learn about the injury. This will allow for a better understanding of the child’s physical, cognitive, and psychosocial status and possible need for outpatient therapy, in order to properly prepare for successful school reintegration.

Understanding Service Determination

Prior to the student’s discharge, or immediately upon the family informing the school of the injury, parents should make a written request to their child’s school principal or special education director for a comprehensive evaluation for special education services and provide current medical, rehabilitation, and other pertinent records. When available, discharge summaries should be sent to the school, as they are critical in understanding the student’s injury and current levels of functioning.

School districts are mandated to conduct full assessments to determine eligibility under the Indiviuals with Disabilities Act of 2004 (IDEA), however, not all students with ABI require an extensive evaluation in order to determine eligibility. If up-to-date testing was carried out before the student returns to school, or the child presents with very obvious disabilities, information from those evaluations can be used to determine eligibility. If a student is determined to be eligible for special education under the IDEA, they will receive an Indivualized Education Plan (IEP), which will include goals to address unique areas of need, services to address the goals, and accomodations and/or modifications to help the student access the curriculum.

To be eligible for special education services, students must meet the following educational definition of TBI that IDEA provides:

“…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; psycho-social 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.” [34 Code of Federal Regulations §300.8(c)(12)]

Most states define TBI using the same verbiage as the federal law, while other states have expanded their definition to include non-TBIs (e.g., brain tumors, strokes, brain infections, near drowning). Professionals working with families of students with brain injury should be familiar with their state’s definition. Each state’s Department of Education website will provide the current definition of TBI. If the state definition is limited to TBI, students with non-traumatic injuries may qualify for services under the category of Other Health Impaired. School officials will help parents with this process. The National Association of State Head Injury Administrators has included a document on their website that provides a state by state review of how TBI is defined by law or otherwise determined for special education and related services (see Special Education & Traumatic Brain Injury (TBI): A summary of State definitions and guidance for educating students with TBI-related disabilities).

In some states, a school district may find the student eligible under Section 504 of the Rehabilitation Act of 1973. Section 504 is a broader based civil rights law that provides students with disabilities access to accommodations and services. If a student with a mild injury does not qualify for special education, a 504 Plan is another avenue for students to receive support at school. While a student on a 504 Plan is eligible to receive many of the same services provided under IDEA, an IEP affords more protections, as well as specially designed instruction. For students with significant needs or those who require more than accommodations, a 504 Plan may be inadequate to meet their unique needs.

The table outlines some of the support services that may be available to students with ABI in an education setting. For additional information see IDEA Sec. 300.34: Related Service.

Support services that may be available to students with brain injury in an education setting

When the student first returns to school, services such as speech, occupational, or physical therapy may be authorized as an outpatient service post-discharge. The services recommended by the hospital team are provided under a “medical model” and paid for by insurance providers or Medicaid. The interventions are clinical in nature and support functioning in all areas of life-home, community, and school. In contrast, in the educational model, students are entitled to receive therapies deemed “educationally relevant” and are provided to enable students to access the curriculum and educational environment, and to benefit from instruction. While most medical rehabilitation therapies are discontinued within the first year post-injury, the effects of TBI on the child’s cognition, behavior, and adjustment to newly acquired deficits frequently persist, and can worsen over time (CDC Report to Congress, 2014), thus school-based therapies are likely to continue to be needed for some students for longer periods of time.

Conclusion

Effective school reintegration of a student with ABI requires immediate and ongoing planning. Professionals can assist families by encouraging them to become informed about the educational supports available and initiate the collaboration process with their child’s school as soon as possible. Ongoing updates to the child’s plan and services are critical as the child improves, or new consequences surface from the injury. Supports should always be individualized to the child’s abilities, and flexibility and ongoing evaluation is key to addressing the child’s changing needs, motivation, learning tasks and school environments.

Families should be provided a point person or case manager in the school system to help them navigate the various school environments and support services to address their child’s changing learning, behavioral and physical needs. Ongoing communication between school personnel, medical providers and the family creates a flow of appropriate supports to affect the most positive outcome of recovery for the student.

References

Centers for Disease Control and Prevention. Report to Congress on Traumatic Brain Injury in the United States: Epidemiology and Rehabilitation. National Center for Injury Prevention and Control; Division of Unintentional Injury Prevention. 2014; Atlanta, GA.

DiScala, C., & Savage, R.C. Epidemiology of children with TBI requiring hospitalization. Brain Injury Source, 2003;6(3):8-13.

Glang A, Todis B, Thomas C, Hood D, Bedell G, Cockrell J. Return to school following childhood TBI: who gets services? NeuroRehabilitation. 2008;23(6):477–486.

Sharp NL, Bye RA, Llewellyn GM, Cusick A. Fitting back in: adolescents returning to school after severe acquired brain injury. Disability Rehabilitation. 2006;28(12):767–778.

About the Authors

Peggy Mazzarella, MA is currently the Special Education Program Specialist in the Wiseburn Unified School District in Hawthorne, California where she holds the TBI added authorization credential. Peggy has 28 years of experience as a public school special education teacher and administrator, and has worked as a pediatric brain injury consultant assisting children with TBI and their families with school reintegration. A career-long focus has been making special education law comprehensible to families and improving the process of appropriate identification and access to school services for children with acquired and traumatic brain injuries in the public school system.

Cynthia Pahr, MEd, CBIST, is the Brain Injury Services coordinator for the San Diego Unified School District, an educational consultant, invited speaker and founder of EduCLIME, LLC, a company offering educational tools and interventions. Ms. Pahr has 30+ years of special education experience, specializing in traumatic & acquired brain injury and physical & health impairments. She provides instruction to support children, adolescents and adults with brain injuries and their families. Ms. Pahr serves on the Board of Governors for the Academy of Certified Brain Injury Specialists (ACBIS), the TBI Guidelines Committee for the Brain Injury Association of America and the San Diego Brain Injury Foundation Board.

Janet Tyler, PhD, CBIST, is the Senior Brain Injury Consultant, Health and Wellness Unit, Colorado Department of Education. For over 30 years Dr. Tyler has worked in the field of pediatric brain injury specializing in developing and implementing innovative statewide programs that provided training and consultation to educators serving students with brain injuries. Dr. Tyler has taught graduate level courses on traumatic brain injury, served as a board member for the Academy for the Certification of Brain Injury Specialists and is past President of the Brain Injury Association of Kansas and Greater Kansas City.