BrainSTARS: A Model Project Designed to Help Children and Adolescents Who Have Acquired Brain Injury

from School Health Reporter, Winter 2003

By Jeanne Dise-Lewis, PhD

Traumatic brain injury is the leading cause of both death and disability in children and youth in the United States . Approximately 2,600,000 children in this country have had an acquired brain injury (ABI), and many of them have learning problems, behavior and self-control difficulties and mental health concerns as a result. Lack of awareness about the many ways a brain injury affects the life and development of a child has resulted in inadequate accommodations and improper teaching of children with brain injuries, compounding the impact of the injury.

A brain injury in a child or adolescent is different in important ways from a similar injury in an adult.  The main difference is that a child’s brain is undeveloped; it is growing and changing from birth until about age 18 or 19. Therefore, some of the “facts” about recovery from brain injury you may have heard that are true for adults do not apply to a child.

First, many people still believe that a brain injury is much less serious if it happens to a child, because a child’s brain is more “plastic” than an adult’s brain. The implication is that a child will “grow out of” his or her deficits.  In fact, the opposite seems to be true:  a child’s brain is much more easily injured, a child has had less time to acquire knowledge, skills, and competencies and a traumatic brain injury can have a “rippling” effect, affecting many areas of development, including behavior control, emotional development and academic skills.

The course of recovery is also more difficult to predict with a child than with an adult. Children’s brains are fundamentally different at different stages of development. It is very hard to know how capacities that have not yet emerged will be affected, if at all, by the injury. It is difficult to predict how quickly the child will regain previously mastered abilities, and how solid these skills will be when they are recovered.

It is relatively easy to tell which areas of life have been affected by an injury to an adult, who is likely to have stable personal relationships, a job and a history of being able to do certain things. Because a child at age 14 can be very different from the person he or she was at age 3, it is hard to truly know what changes are related to the brain injury, and which ones would have been there anyway.  Children go through normal changes in personality as they grow, and some behaviors will change or go away on their own. Parents often are aware of subtle changes or areas of difficulty in a child’s life. However, parents often feel unsure of whether or not they are correct in connecting these changes to the injury, and they have a difficult time finding information about brain injury that is easy to understand and focused on practical matters.

In 1991, a Colorado Department of Education task force found that there were approximately 6,000 children of school age who had sustained traumatic brain injuries. An estimated 75 percent of these students required special services to meet their unique, individual needs, and the task force found that public schools were, in most cases, the “exclusive providers of long-term services for brain-injured persons through the age of 21, or until high school graduation”  (CDE Guidelines Paper: Traumatic Brain Injuries, 1991). The CDE Guidelines Paper was one of the first attempts to provide an organized source of information to Colorado school districts about the educational needs of students returning to school after an acquired brain injury.  Although useful in drawing attention to the special needs of this group of students, the guidelines are too general to help teachers become educated about brain injury or become expert interventionists for these students.

Typically, school personnel have had not had any coursework in acquired brain injury during their education.  Most teachers who report any training say that they have received advice from other teachers, or that their knowledge came about through experience on the job. Because teachers are not trained in brain injury or cognitive rehabilitation, they are often unable to be the “experts” that parents hope for as their children return to school. Interventions that work well for students with other disabilities may not be as effective for a student with brain injury, and the student can be misidentified as having “motivational” problems, emotional disturbance or Attention Deficit Disorder. Because of the lack of education and awareness about the impact of ABI on children, parents and school personnel may find themselves at odds with one another, with all parties frustrated over their difficulties meeting the student’s needs.

In May of 1999, the BrainSTARS project was funded by the U.S. Department of Education. The goal of the project was to increase the capacity of both parents and school personnel to work together effectively and apply interventions and strategies that work to accommodate the needs of students with acquired brain injury.

BrainSTARS Values and Model Program

The essential value of the BrainSTARS model is that effective support for students with brain injury requires a team effort. The model program provides consultation for parents and school personnel so that they can create and support maximally functional family-school teams knowledgeable about brain injury. The BrainSTARS model is grounded in the belief that if parents and school personnel are well educated about the impact of brain injury on a student’s life, they will be able to work collaboratively to support a student’s maximal development and success in school.

BrainSTARS Manual

The BrainSTARS manual is a comprehensive, 320-page, practical guide for parents and school personnel; it includes background information about brain injury, child and adolescent development, ways to create positive change, a comprehensive list of problems associated with brain injury, recommended interventions and worksheets. The manual was reviewed by an Advisory Board of parents, school personnel and students with brain injury, as well as by a group of national experts. It was extensively field-tested with parents and school teams and revised to represent current best practices in the education and development of students with ABI. We strongly recommend participation in a BrainSTARS training event or the BrainSTARS consultation model for optimal use of the manual. 

Training Events and Consultation

Training events and support services have been provided for 1,200 school personnel and the school community.  These half-day and full-day workshops are educational in focus, combining general information about the school-related needs of students who have brain injury with practical, hands-on strategies and training in the use of the manual as a resource.

Consultation with school personnel and parents has taken several forms:  a telephone helpline, classroom observation, telephone conferences, records review and interpretation, IEP consultation and in-school consultation.  The telephone helpline  (1-800-458-6500, ext. 6642) has been accessed by more than 400 callers wanting information about brain injury in children. About 40 percent of the calls have resulted in additional consultation services being offered.

Finally, the BrainSTARS Model Program has been offered to about 60 students and their family-school teams. This program offers three consultation meetings including a student’s parents, school team and BrainSTARS consultant, to carefully tailor the BrainSTARS Manual interventions to the needs of a particular student and school team.

The BrainSTARS program has had significant impact on the educational experience of more than 100 school-aged children with acquired brain injuries, their families and teachers, nationwide. If you have concerns about a student’s progress in school following ABI, ask your principal to connect you with the Brain Injury Resource person for your district.

Did You Know?

• Children who have had such physical traumas as brain injury have increased metabolic needs for many months after the injury.
• You can help by insisting that children eat breakfast before school and scheduling a snack about 1 1/2 hours later.  This will reduce mental fatigue and prevent headaches.
• You can help by providing snacks that have some fat and protein in them to prevent swings in energy, like string cheese, nuts, peanut butter crackers, half a meat sandwich, milk, protein bar, or “instant breakfast” drinks.