Therapy Program for Traumatic Brain Injury in Students
Dr. Schutz, Dr. Rivers, and Dr. Janet Whiteside of the UCF Department of Communication Sciences and Disorders announced in February of 2008 the opening of a new program of on-campus academic rehabilitation for UCF students with traumatic brain injuries. This announcement brought a flood of inquiries, not only from UCF students, but from student/survivors on other college campuses, student/survivors who want to go to college, and student/survivors who are in school at the K-12 level. These students and their parents are to be commended for their awareness of the importance of getting specialized help. Unfortunately, the education and healthcare systems do not offer academic rehabilitation.
The directors of the UCF Program recognize the massive need for special help for students at all levels who have sustained TBI. However, our program is designed to treat only current students at UCF. The curriculum is set to be useful for students who are already participating in college, and our services include tutorial help for one UCF class in which the student is currently enrolled. So we are not able to offer admission to students who are attending other colleges, or who were attending college or university before the injury but have not returned to school since the injury.
We intend our program to serve as a model for other universities, and we also plan to develop a service to consult with high schools and community colleges, so that they can start similar programs of their own. Currently, we do not have the staff resources at UCF needed to operate the consulting service. We are in the process of applying for grant funding to support added staff.
The UCF program offers a specialized form of self-therapy. The training sessions serve to teach our clients how to reorganize their learning, studying and test-taking, but the lion's share of the work is done by the student, not the therapist. So the UCF program is very much like the GiveBack program. The GiveBack program is fully outlined in the survivor and family handbooks that are found in the Resources section of this web site.
For students at the K-12 level or at colleges or other universities, and for their families, we suggest the following:
(1) Begin your own self-therapy program following the instructions in the handbooks. The therapy exercises in the handbook are used to teach yourself to summon the concentration, mental effort, and quality control you need to make your brain work at its best. The Daily Schedule described in the handbook is an essential tool for organization and time management. The techniques for dealing with social problems are the same for adults, adolescents, and older children.
Elementary school children are rarely able to conduct their own self-therapy sessions. They require close and active supervision from parents or community resources. No program offered under managed care provides enough of this kind of supervision by therapists, so every family either needs to provide the supervision or to hire or recruit someone who can do it for them.
(2) Participate in GiveBack. If you are in or near Central Florida, come to the meetings and help us to develop a special interest group for students and their families. If you live outside of this area, you may want to begin organizing your own local chapter of GiveBack. We will be glad to guide you through the process.
(3) Help to develop resources. Students need to learn how to take notes from lectures and from readings, how to reduce the material by underlining it, how to turn underlined material into self-tests (for example, using flash cards), and how to practice with the flash cards in the way that leads to the most effective learning. GiveBack does not have a curriculum of materials and exercises at present (nor does any other organization, to our knowledge), because materials would be needed at each grade level, making the library huge. Dr. Schutz is currently designing curriculum materials for the college level. If families would like to get involved to help design materials for lower grades, we will be happy to coordinate that effort, and to join in when the college curriculum is finished.
(4) If you would like to work with others on developing a head injury program for your family member, it is suggested that you organize a head injury families group at your school or school district. A families group may also be able to recruit some assistance from the school.
(5) Contact your state legislators, state department of education, and Congressional Representatives and Senators to urge them to support developing these resources in your area. The members of Congress have already been informed about GiveBack by one Senator, who distributed copies of our handbooks to all of them. However, they have not yet chosen to provide any financial support to GiveBack. There are literally millions of family members of students with TBI who are not getting any specialized help, and if they went to bat for governmental funding, you would be much more likely to have services provided in your local area.
Basic Information About Traumatic Brain Injury in Students
The parents of a school-age child who has sustained a traumatic brain injury have a very difficult road to travel. The research on children with TBI indicates that most hospitals do not give parents much preparation for the long-term future, and most schools are not prepared to meet the child's new educational needs. Parents who accept the explanations and services that they are given generally end up regretting their decision to do so. Obtaining the appropriate and needed help for a child with TBI usually requires a great deal of parental initiative and persistence, and sometimes the refusal to settle for less.
The basic facts about TBI in children are similar, but not identical, to those about adults. How many long-lasting effects there will be, and how serious they will be, is a function of how much the brain got injured. This, in turn, is a function of the length of coma and the extent of any damaged areas shown on CT or MRI scans. If the coma can be measured in hours or days, or if there are areas of damage, then educational and behavioral effects can be expected. While the child is in the hospital, the doctors and therapists are not likely to discuss these effects unless you bring them up, and it may not be possible to get them to fully explain how serious the effects are likely to be. Although there are some brain injury experts in the medical professions who offer complete explanations, they are few and far between. In most cases, the professionals emphasize the positive to the point of potentially misleading parents. Thus to understand what the injury has actually done, it is likely to be necessary for parents to do their own research. At the end of this article, I will provide you with several web sites with high-quality information from brain-injury experts. I will try to update this list from time to time as I find other trustworthy sources. Please do not feel compelled to accept the statement "Only time will tell." because a great deal of information about the expected future is available to you by the time you leave the hospital.
There are three long-term problems that are caused by serious head injuries in general. The first, reduced learning ability, is tremedously important for school-age children. Taught in the normal way, and studying in the normal way, the typical child who has been in a coma begins to fall behind his or her classmates, and gradually falls farther and farther behind. The problem seems small at first, but soon it becomes apparent that the child is not getting a proper education anymore. The second, inconsistent attention, interferes with listening and learning, as well as receiving assignments. The third and most serious is impairment of the executive functions. There are several executive functions, and each one plays an important role in disability and recovery. Some children have difficulty in initiating action, some have trouble in controlling their impulses and urges, and many have difficulty with both of these. Disorganization affects time management, writing, spoken explanations, and completing tasks. Thinking and behavior are easily scattered by overstimulation or intense emotion. Too many tasks are rushed or approached too casually, without planning ahead, causing errors. Behavior tends to be somewhat less well controlled than it was before the injury, which can lead to embarrassing moments and social rejection. Each of these problems may be subtle at first, but over time, their effects tend to become more serious because they interfere with normal development.
It is important for parents to understand that there are partial, and in some cases nearly complete, answers to all of these problems that have been developed by head injury specialists. Moreover, parents need to know that a federal law called IDEA (the Individuals with Disabilities Education Act of 1990/1997/2004) entitles your child to receive whatever expert help is needed to make education effective. However, it is also important to know that very few children receive any help under this law. The schools do not advertise it, and very few hospital or medical providers tell you about it. Only one out of every 25 children with TBI are classified to receive these services in the most active state (New Jersey), and less than one out of every 100 children with TBI receive these services in Florida. The law says that you can have your child evaluated for this program simply by asking, but most parents don't know the program exists or that they can ask for this help. Even if the school does staff your child as TBI, it does not mean that they have an active program to help children, but it does mean that they have accepted the responsibility to provide one. It is a necessary first step toward learning how to fix these problems. It is also important for you to realize that under no circimstances will anyone in the school system do everything, or most of the things, that could be done to help, and that a good recovery will require you to participate heavily and to recruit as much help at home as you can. But there is a great deal that you can do.
GiveBack is dedicated to providing you with information and encouragement. Please feel free to ask us questions and to let us know how your efforts are working out.
--Dr. Larry Schutz
Web Sites Offering Useful Infomation About Childhood TBI:
Mayo Clinic (Dr. James Malec)
Mt. Sinai Hospital (Dr. Wayne Gordon)
State of Oregon
DISCLAIMER
GiveBack, Inc. does not and will not provide any kind of medical, psychological or other professional treatment, evaluation, service or opinion, nor does it or will it charge any fees. GiveBack, Inc. members share personal experiences and ideas for the purposes of encouraging and inspiring the recovery efforts of others in the community of head injury. Membership in GiveBack, Inc. is not a substitute for professional treatment.