2.Consider curriculum and therapy goals; see how to merge the goals into activities that will accomplish both. For example, what is the math vocabulary that can be learned while working with a tutor or the speech-language pathologist?

3.Consider teaching the process of an activity rather than insisting on performance of the activity. For example, can the child tell you how to subtract -- what is the idea behind the procedure? Then, rather than requiring many repetitions of the same activity (do 25 homework problems), can the activity be modified to show she understands what she is doing (do 10 homework problems and verbally describe what the process was to get the answer)? Can the child tell what the idea for writing a sentence might be? Can she write the main parts of that sentence? These activities get at executive functioning -- knowing what you can do well and where you need assistance, as well as developing organizational skills.

If you think about the underlying problems that the child is demonstrating (see the reports from the hospital and therapists), you can create lots of teaching opportunities that will address both the therapeutic needs as well as the academic ones. Remember to start slowly and build the skills as the child demonstrates stamina and ability. Bring in the therapists and have them brainstorm with you about how to incorporate therapy into the classroom whenever possible.

Literature you may find helpful:

1. Bowen, J. M. (2005). Classroom interventions for students with traumatic brain injuries. Preventing School Failure, 49(3), 34–41.
2. Bullock, L. M., Gable, R. A., & Mohr, J. D. (2005). Traumatic brain injury: A challenge for educators. Preventing School Failure, 49(3), 6–10.
3. Deidrick, K. K. M., & Farmer, J. E. (2005). School reentry following traumatic brain injury Preventing School Failure, 49(3), 23–33.
4. Lash, M., Wolcott, G., & Pearson, S. (2000). Signs and strategies for educating students with brain injuries: A practical guide for teachers and schools (2nd ed.). Wake Forest, NC: Lash & Associates.
5. Ylvisaker, M., Todis, B., Glang, A., Urbanczyk, B., Franklin, C., DePompei, R., & et al. (2001). Educating students with TBI: Themes and recommendations. Journal of Head Trauma Rehabilitation, 16, 76–93.

QUESTION:

I am a teacher seeking advice on how to help a high school student with traumatic brain injury and behavior problems. The student is capable of at least average school work, but he cannot seem to stay out of trouble. He is easily distracted and has a difficult time controlling his anger. At times he is too aggressive for the classroom. How can his teachers help this student achieve academically? What are some behavior management techniques that are appropriate for the classroom?

ANSWER

You are on the right track when you are looking at behavior as a reason for lack of progress in school. However, perhaps you may want to view these behaviors a little differently. I wonder if they are behaviors that he is choosing to demonstrate or whether these behaviors are telling you something about the underlying processes that have been affected after the brain injury. If the choice is his, then behavioral management may be appropriate. If they are underlying processes that are affecting behavior, then modification of your expectations and the daily routines may be the most beneficial to him.

If he is easily distracted, have you considered that his attention span may not be adequate for the situation in which he has been placed? What are the typical environmental distractions? Is he seated in the quiet part of the room (away from teacher’s desk, windows, busy traffic patterns)? What else is going on in the classroom? Is it easy to pay attention to the teacher or are there other simultaneous activities taking place? Can he be moved about the classroom for different parts of the class? For example, sit in front of the teacher when lecturing is taking place, move to a "work station" to complete written work, move to another seat to work on a two-person project? All of these activities will aid with the underlying problems of a short attention span which leads to being distractible.

Can he tell you what creates his frustration that sets off aggressive behavior? Often, it is overload of classroom demands -- too much requested at once, too much verbal instruction, listening too long to lecture or discussion, doing too many different homework assignments for each teacher without coordinating who is assigning what each day. Have you ever been listening on the phone and had someone approach you and try to talk to you? Recall the internal frustration as you try to process two messages at the same time. That information overload often triggers a frustrated aggressive response in teens with TBI. How can you control the information overload so that the student does not become frustrated and have an outburst? Does he know his own physical symptoms of overload? Does he feel agitated, flush on the neck or face, begin to make a fist, feel an upset stomach beginning? Can he tell you this prior to having the outburst? Is there a place in school where he can walk, go to relax or talk with a guidance teacher prior to becoming aggressive? Consider allowing for break times and decreasing the work load in order to reduce frustration.

Literature you may find helpful:

1. Feeney, T. & Ylvisaker, M. (1995). Choice and routine: Antecedent behavioral interventions for adolescents with severe traumatic brain injury. Journal of Head Trauma Rehabilitation, 10 (3) 67 - 86.
2. Feeney, T. & Ylvisaker, M. (2003). Context-sensitive behavioral supports for young children with TBI: Short-term effects and long-term outcome. Journal of Head Trauma Rehabilitation, 18(1), 33-51
3. Gardner, R. M., Bird, F. L., Maguire, H., Carreiro, R., & Abenaim, N. (2003). Intensive positive behavior supports for adolescents with acquired brain injury: Long-term outcomes in community settings. Journal of Head Trauma Rehabilitation, 18, 52–74.
4. Ylvisaker. M. & Feeney, T. (2002). Executive functions, self regulation, and learned optimism in pediatric rehabilitation: A review and implications for intervention. Pediatric Rehabilitation, 5, 51–70.
5. Ylvisaker, M., Jacobs, H. E., & Feeney, T. (2003). Positive supports for people who experience behavioral and cognitive disability after brain injury: A review. Journal of Head Trauma Rehabilitation, 18, 7–32.
6. Yody, B. B., Schaub, C., Conway, J., Peters, S., Strauss, D., & Helsinger, S. (2000). Applied behavior management and acquired brain injury: Approaches and assessment. Journal of Head Trauma Rehabilitation, 15, 1041–1060.

QUESTION:
For the student with short-term memory loss, learning is complicated. Are there some special techniques that the teacher can use in the classroom to help a student with traumatic brain injury learn?

ANSWER
Students with brain injuries often have trouble remembering, especially new information. It is important to know that helping students remember better is not just having them do the same thing over and over again. (How many of us remember what the Lincoln head side of a penny looks like even though we have seen hundreds of pennies in our lives?)
To help a student remember better, try these "Top 10" cognitive strategies:

1. Make sure the student is paying attention. Make direct eye contact with the student whenever you are teaching new information.
2. Couple and connect new information with previously learned information.
3. Try to make the information to be learned meaningful and functional.
4. Match the student’s learning style (e.g., visual learner) with the teaching method.
5. Frequently summarize information as it is being taught, using overlapping techniques such as repetition and rehearsal.
6. Use pictures, diagrams, and charts to reinforce what is being learned.
7. Control the amount of new information that is being presented.
8. Give multisensory presentations of new information.
9. Teach the student how to organize new information for better memory retention.
10. Teach the student to use a databook for notes, assignments, appointments.

QUESTION:
I have a student who recently sustained a traumatic brain injury. I understand that she was having academic problems before the injury. Is there a way for the psychologist who tests her to determine whether her current deficits are due to the brain injury or possible mental retardation prior to the accident? Is the actual diagnosis unimportant if we provide her with the services she needs?

ANSWER
It is very important that this student be evaluated by a neuropsychologist to answer this first question. This is a psychologist who has special additional training in brain injury and the relationships between the brain and behavior. Testing can help determine her ability to learn new information, not simply what was learned prior to the injury. The standard tests usually given by psychologists, especially those in the school, often focus on measuring intelligence and can be misleading after a brain injury since they do not give a complete picture of how the brain is functioning.

The neuropsychologist can determine the effects of the brain injury upon this student’s ability to learn, communicate, plan, organize and relate to classmates and teachers. It is very important that the neuropsychologist chosen have experience with students of similar age and be familiar with schools. The test results will be most helpful if the neuropsychologist interprets them in understandable language for school staff and provides practical strategies and suggestions that teachers can use in the classroom.

The diagnosis of traumatic brain injury is very important. First of all, it indicates that this student’s development was interrupted by the injury. It is even more important given the question about prior mental retardation. Some of the changes that often result from a brain injury, such as a flat or dull tone of voice, slower thinking, and difficulty with memory may give the impression of retardation but are a consequence of the brain injury and not necessarily due to lowered intelligence. A student with a brain injury will also have different educational strengths and difficulties than a student who is mentally retarded. It is very important to provide this student with instructional strategies that consider both the brain injury and possible retardation.

I have heard that a person who sustains a brain injury will experience a better outcome if he receives intensive rehabilitation in the first year of recovery. Can a person continue to make any significant progress after the first year? What about someone who does not receive rehabilitation in the first year -- how does this affect recovery?

ANSWER

If one assumes that the injury you are referring to was due to trauma without significant concurrent lack of oxygen or blood flow to the brain (also called hypoxic ischemic brain injury), then one would be in a situation where the answer to your question would depend on several different factors. Firstly, it is important to understand the type of brain injury that a person incurs in order to have a sense of what their neurologic recovery will look like relative to the time frame in which improvements are likely to occur. Specifically, primary brain injury is divided in to focal and diffuse brain damage. The more purely diffuse an injury is, the more likely it is that neurologic improvements will continue on an ongoing basis over several years whether or not an individual participates in intensive rehabilitation or any kind of rehabilitation during the first year post-injury. Inherent in this statement is the fact that persons, depending on the specifics of their injury, can certainly make significant improvements beyond one year post-injury. There is a significant amount of experience as well as research that demonstrates that persons with more purely diffuse brain injuries can continue to make improvements well into and potentially beyond the two to five year range post-injury. Predominantly focal injuries, on the other hand, seem to act much more like strokes in terms of their neurologic recovery course. Many of these patients generally show a plateau in neurologic recovery within the first year post-injury although this is certainly not written in stone and many other variables come into play in terms of affecting the ultimate neurologic recovery profile scene.

The exact role that rehabilitation plays in the rate of recovery is unclear at the present time. There is some research to support the idea that intensive rehabilitation may facilitate the rate of recovery but not necessarily the ultimate plateau. This is still an area of work that requires a lot of further research to answer in a more definitive fashion. From professional experience, I would state that complications which may be associated with the severe brain injury are at a much greater potential to be addressed in the context of the person being in an intensive rehabilitation program during their first year post-injury than not. Unfortunately, many individuals with severe brain injuries are "shipped off" to programs that are not adequately equipped to manage their cognitive, behavioral and/or physical problems. This leads to the potential for complications which then slow the patient’s overall recovery and potentially leads to significant morbidity if not mortality. It needs to be understood that much of the person’s neurologic recovery will occur regardless of whether a person is in a formalized rehabilitation program as there are multiple mechanisms by which "spontaneous improvement" occurs without any interventions. Certainly it has been the experience of most rehabilitationists that structured, medically sound, rehabilitation care can help diminish complications associated with significant brain injury, educate patients and families regarding compensatory strategies and adjustment to disability as well as facilitate community re-entry, among many other reasons for providing such intensive services. Much is to be learned, however, regarding the exact role of specific rehabilitation intervention and rehabilitation as a whole in terms of the effects that these measures have on ultimate neurologic plateau.

QUESTION:

What is the role of the speech-language pathologist in traumatic brain injury rehabilitation?

ANSWER

The speech-language pathologist (SLP) serves a number of roles in the rehabilitation of the individual with traumatic brain injury. The SLP may meet the patient at any stage of recovery, from the intensive care unit through vocational re-training. Wherever the patient is in the recovery process, and SLP will typically (1) Evaluate: Evaluation of patients with TBI includes use of formal and/or standardized assessments, as well as informed/behavioral observation of language comprehension, language expression, pragmatic language (use of language in social situations), oral-motor function for speech and swallowing, gestural function and other areas. Evaluation is typically an ongoing process, in order to monitor the patient’s progress and make treatment adaptations; (2) Treat: When appropriate, treatment begins immediately, specific goals and objectives are developed for each patient, and are revised and updated according to the patient’s needs. Treatment decisions are functionally based in order to address those deficits that most impact the patient’s day-to-day communication function; (3) Educate: Patient and caregiver education is an essential and ongoing process for the SLP. General education regarding TBI, and cognitive-linguistic function is provided as well as specific education and training in the use of strategies designed to optimize function. Recommendations regarding environmental modifications or specific cueing methods for word retrieval are two examples of the ongoing educational process required in the rehabilitation of patients with TBI; (4) Communicate: The SLP regularly communicates with other members of the rehabilitation team in order to achieve an integrated treatment approach.

QUESTION:

I have been advised to have a neuropsychological evaluation. What should I expect to occur during the evaluation? What will this evaluation tell me?

ANSWER #1

A neuropsychological evaluation is an extensive assessment procedure conducted by a clinical psychologist with special training in neuropsychology. Neuropsychology involves a particular focus on brain-behavior relationships. Put more simply, this means that the neuropsychologist will attempt to determine how the injury to your brain has affected your mental skills, your emotional adjustment, and your behavior patterns.

A neuropsychological evaluation often entails a full day or more of formal psychological testing as well as an extensive interview with the neuropsychologist. In the interview, the neuropsychologist will ask you to discuss your injury and surrounding events, including the various types of treatment you may have received. The neuropsychologist will ask you questions about your personal history; that is, events which took place before the injury. This will include your medical health, any history of prior injuries, your mental health, your use of alcohol or drugs, your educational and work histories, and your family and marital (if applicable) history. Finally, the neuropsychologist will ask you to describe in detail the current problems or symptoms you are experiencing and may ask about other symptoms or problems as well.

Following the interview, you will be administered numerous tests which will assess a wide variety of mental functions known to be affected by brain injury including (but not necessarily limited to) paying attention and concentrating, remembering information, learning new information, communicating with others, and reasoning or problem-solving abilities. In addition, you may be asked to complete questionnaires that will help the neuropsychologist better understand your current emotional status with respect to such problems or symptoms as increased irritability, depression, or anxiety. While the type of tests described above are time consuming and not always easy, they do not involve pain or significant physical exertion and most patients find them to be challenging rather than boring.

After the results of the neuropsychological evaluation have been scored and interpreted, the neuropsychologist or your medical doctor will explain these results to you in detail and include any recommendations based on those results. The results of a neuropsychological evaluation are often helpful to your medical doctor and other rehabilitation therapists in tailoring your rehabilitation therapies to the particular strengths and weaknesses indicated by the evaluation. The results of the evaluation also can help you and those treating you to make important decisions such as whether it is safe to return to driving an automobile and whether it is advisable to attempt to return to work. As recovery from traumatic brain injury is a process often involving 1-2 years or more, one or more follow-up neuropsychological evaluations may be ordered. The results of more recent evaluations can be compared to the preceding evaluation in order to monitor your recovery and to adjust treatment, academic, or vocational planning accordingly.

ANSWER #2

The purpose of a neuropsychological evaluation is similar to CT or MRI exams. Both try to locate areas of the brain that may be damaged after a traumatic brain injury. The CT or MRI actually takes a snapshot of the brain and, if there is any obvious damage, then the doctor can actually see it. Neuropsychological evaluations do not take an actual picture of the brain. However, depending on how a person performs on the battery of tests, the neuropsychologist can get a good idea of what areas of the brain are likely damaged. This is because each test that is given is related to one or more areas of the brain and the pattern of low and high test scores gives the neuropsychologist an idea of possible problem areas.

This type of examination can take an entire day. It is often broken up into several testings to avoid fatigue. It involves a variety of paper/pencil tests, an IQ test, an evaluation of the person’s personality, and tests of other things like touch sensitivity, vision and hearing, and academic skills like reading, writing, and math.

The evaluation will provide you with an assessment of your functional skills as will as areas of weakness. It should also give you an idea of what to do about problems you may have after the injury. Unfortunately, many neuropsychological evaluations focus on diagnosis and do not deal extensively with treatment options. Although the focus on diagnosis may be necessary in some situations (e.g., court cases), the better evaluations provide the patient and his or her family with useful information about how to deal with their everyday problems. Be certain to ask for this type of information before the evaluation begins.

QUESTION:

After a minor car accident, I was taken to an emergency room and given a CT scan. The doctor said the CT scan showed no brain injury. However, here I am, 8 months later, and I am still experiencing problems. I have severe headaches, periods of confusion and memory loss, and difficulty finding the words to express myself. Is it possible that I sustained brain damage that the CT scan did not show? Should I have another CT scan to see if anything shows up now?

ANSWER

Many brain injuries can cause serious problems without any noticeable damage that would show up on a CT scan. This is why many patients say that their biggest problem is that they look fine on the outside. Sometimes the tissue damage may be slight although still sufficient to cause problems with thinking and memory or speech. The neuropsychological evaluation can often detect brain damage even though the CT scan does not show any serious problems. Rather than get another CT scan, you would be better off getting a complete neuropsychological evaluation. If the problems persist or worsen, then another CT scan or an MRI or PET may be warranted.

QUESTION:

My 14 year old daughter had a brain injury about 2 years ago and is still having some big problems. Several times a month I attend a support group for family members and people there talk about "CARF programs." I've never heard of CARF. What is CARF and should I send my daughter to one of these programs?

ANSWER

CARF...The Rehabilitation Accreditation Commission is a private, not-for-profit standard setting and accrediting body for the rehabilitation industry. CARF was established in 1966 and accredits over 12, 600 programs in the United States, Canada, and Sweden. CARF was started because providers, consumers, and purchasers of rehabilitation wanted to have a mechanism that could look at the quality and value of rehabilitation being offered.

CARF standards are practical tools to help a program become focused on the consumer with an emphasis on being able to demonstrate results in functional improvements and efficient delivery of care that customers are satisfied with.

Standards are applied to a program through an on-site survey process done by two peers called surveyors. These surveyors are individuals trained by the Commission to fairly apply the standards , give consultation and suggestions on how to improve and make recommendations in those standards that the program is not in conformance with. The surveyors look at a variety of areas including leadership, financial, strategic planning, personnel, health, physical plant and safety, the rehabilitation process, the ability to measure and manage information about program performance and the specifics of a specialized rehabilitation program.

CARF has had Brain Injury standards since 1985 and has continued to update these standards to ensure the value of programs accredited by CARF. In July 1997 we also will have the new Pediatric Family-Centered Rehabilitation Program standards which you may be interested in since your daughter is 14. These standards focus on the child/adolescent and the family as the center of all activities. The emphasis of these programs is to integrate the child/adolescent back into their family unit, school and community.

Each CARF accredited program has a person who coordinates services and individuals are encouraged to visit prior to entering into any program. You can obtain a list of CARF accredited Brain Injury programs by calling the Commission at (520) 325-1044 #156 and asking Fonda, the Medical Rehabilitation Coordinator to send one to you. You can also E-mail your request to [email protected] and include the address where you would like the list sent to.

QUESTION:

Less than a month ago our lives changed, to say the least, when our mother (she's about 50) had a bad car accident. She's been in the hospital since. Now she's on what they call the Neurosurgery Floor, but they want to move her for rehabilitation soon. I've toured the two rehabilitation programs in our town. One of them is about 40 miles away, kind of far, but they say it has "CARF approval." The other one is about 5 minutes from our home. When I toured the program near our home and asked about CARF, they said they didn't have CARF approval. They said they didn't need it and most rehabilitation programs don't have CARF approval anyway. We have heard that CARF programs are better, but the CARF program is farther away. Both rehabilitation programs seem pretty good. What should we think about in making a choice?

ANSWER

Since I have also had to make a choice about a rehabilitation program for my mother in the past I would offer the following suggestions.…

1.Ask what percentage of individuals in the programs are in your mother's age group? When were these people in the program? (a year ago, 6 months ago, now?)

2.What percentage of the patients seen in their program have acquired brain injury?

3.What percentage of the individuals within the same age bracket and diagnostic category of your mom go home? need assistance? go to supported living? go to long term care?

4.How would they involve you as family members? What would your role be? What kind of training and education would you receive?

5. How often will you be expected to participate in team conferences? Family conferences?

6. You know your mom. When you visit these places would she like the decor? Would she be distressed about anything that she would see, hear, smell?

7. Does your mom have any special needs? Requests? Ask how they would meet those special needs and requests.

8. Ask for their latest satisfaction surveys of people in their program. Ask to speak to current family members of patients in the program. Is there a support group meeting you could attend?

9. Ask what outcomes they would predict for your mother and what would be the length of stay? How would they facilitate your mother's movement through the rehabilitation continuum of care? Are they aware of her monetary and insurance resources to plan judiciously with you?

10. What requirements do you have with your own family that driving 40 miles would be prohibitive to the health of yourself or your family?

CARF...The Rehabilitation Accreditation Commission has been in existence as a private, not-for-profit accreditation and standard setting organization since 1966. We accredit over 12, 600 programs in the United States, Canada, and Sweden . In the arena of Brain Injury we have had standards since 1985. We currently accredit over 465 Brain Injury programs so to say that most rehabilitation programs don't have CARF accreditation in Brain Injury is an interesting statement. In fact most third party payers, reinsurance companies and case managers in the arena of brain injury require or request CARF accreditation.

QUESTION:

My parents are dealing with several medical professionals as my sister goes through acute rehabilitation. When I talk with my folks, I get the impression that they are "in the dark" when it comes to my sister’s care and progress. They seem confused about what the doctors have said and a little passive about asking important questions they have. Is there any advice I can give them on how to communicate more effectively with the doctors and rehabilitation staff?

ANSWER

You can certainly encourage them to ask questions and suggest they write down their questions when they think of them, so they can refer to their list of questions when the situation (like a team meeting) is stressful and it would be easy to forget to ask. Team meetings, where information about your sister is probably shared, can be very overwhelming. Because of the number of people involved and the terminology they use, you might want to suggest that your parents take a small cassette recorder and tape record the meeting so they can listen to it later. As a sibling who is also affected by your sister’s injury, you certainly have a right to be at the team meetings, too. From the sound of your question, you would be a good person to "demonstrate" or "model" for your parents how to ask questions in the meetings. You may also want to suggest to your parents that, if they feel overwhelmed by the number of professionals involved, or concerned about disrupting the pace of the meeting, they identify the team member with whom they feel most comfortable and ask that person to meet with them to talk about their concerns. Also, many insurance companies assign case managers to oversee an individual’s treatment; if your sister has one, the case manager can provide or clarify information your parents need.

Your impression that they are "in the dark" may be a reflection of their emotional response to your sister’s situation. They should be encouraged to seek help in coping with the changes in their lives, either from a professional or a support group for family members of survivors of brain injury. The Brain Injury Association, Inc., at (202) 296-6443, should be able to give them information on support groups near them.

There are also publications to help family members and caregivers understand what is occurring. The Brain Injury Association, Inc. should be able to provide you or your parents with information on services they could recommend. A resource I would recommend is Family Articles About Traumatic Brain Injury (Communication Skills Builders, Tucson, AZ 1994).

QUESTION:

Is psychotherapy appropriate for someone with traumatic brain injury? The client in question has cognitive impairments in areas such as memory, attention, and judgment. However, the client is very motivated; he has a positive, open attitude. What would be the limitations and benefits of psychotherapy for someone like this?

ANSWER

There are different reasons why a client with a TBI might seek psychotherapy. One reason is that living with TBI can be difficult emotionally. Having a TBI might cause devastating personal losses and change in a person's self-concept. Psychotherapy can help. Cognitive problems do not necessarily mean therapy is not possible. First of all, cognitive loss is not all or none; people with impaired cognition usually maintain some intellectual ability. Second, people can benefit from therapy without remembering what is said. Often the most important ingredient in therapy is developing a safe, caring relationship with the therapist, and this can happen without the client remembering the details of what is said.

Another reason a client might seek psychotherapy is that TBI can cause changes in behavior that make the person hard to get along with, or make it hard for the person to stick with some activity. Such people often benefit from practical behavior strategies. Therapists often meet with a client and his family to suggest such strategies. Sometimes if the family acts differently around the client, the client's behavior will improve.

Finally, some clients benefit from medicine to help depression, anxiety, agitation, and other emotional consequences of TBI. Choosing medication for someone with TBI can be tricky; because such clients can have medical and cognitive problems, it is important to watch for side effects. If someone has cognitive problems, it is important to ensure that he take medications on schedule. Taking too much medication or missing medication could be dangerous.

With all people, deciding if therapy will help, and if so, what kind of therapy, must be made on a case-by-case basis. All therapists should monitor whether therapy is helping, and if it isn't, they should either stop therapy or suggest something new.

QUESTION:

My brother sustained a serious head injury and remains hospitalized. The doctors say he is in an "agitated" state. He seems to have gone crazy. What does it mean to be in an "agitated" state and when will my brother regain his senses?

ANSWER

Agitation is defined as excessive behaviors occurring during altered states of consciousness (Bogner & Corrigan, 1995). In traumatic brain injury it occurs during the period of post-traumatic amnesia and is marked by restlessness, aggression and/or emotionality (Sandel & Mysiw, 1996). Pronounced agitation during the acute phase of recovery occurs to approximately one-third of persons who sustain serious traumatic brain injuries (Zielinski, Theroux-Fichera, Tremont, Rayls & Mittenberg, 1994; Bogner, et al., 1995). It is not known why some people show more agitation than others do, though its occurrence has been associated with younger age and more severe injury (Levin & Grossman, 1978). In rehabilitation, the time that agitation lasts varies greatly from one person to another. Agitation resolves for almost all patients. It is not considered an abnormal part of recovery, and some schemes for describing the early phase of recovery from brain injury consider it a distinct stage (Malkmus, Booth & Kodimer, 1980). The primary concerns in treating agitation are to minimize the disruption it can cause for addressing therapeutic goals, while protecting the patient and staff from bodily harm (Brooke, Questad, Patterson & Bashak, 1992).

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3. Brooke, M., Questad, K., Patterson, D., & Bashak, K. (1992). Agitation and restlessness after closed-head injury: A prospective study of 100 consecutive admissions. Archives of Physical Medicine and Rehabilitation, 73, 320-323.
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6. Corrigan, J. D., Bogner, J. A. (1994). Factor structure of the Agitated Behavior Scale. Journal of Clinical and Experimental Neuropsychology, 16, 386-392.
7. Corrigan, J. D., & Mysiw, W. J. (1988). Agitation following traumatic head injury: Equivocal evidence for a discrete stage of cognitive recovery. Archives of Physical Medicine and Rehabilitation, 69, 487-492.
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13. Malkmus, D., Booth, B. J., & Kodimer, C. (1980). Rehabilitation of the head-injured adult: Comprehensive cognitive management. Downey, CA: Professional Staff Association of Ranchos Los Amigos Hospital, Inc.
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15. Sandel E., & Mysiw, W. J. (1996). The agitated brain injured patient. Part 1: Definitions, differential diagnosis, and assessment. Archives of Physical Medicine and Rehabilitation, 77, 617-623.
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QUESTION:

What is the role of the Occupational Therapist in brain injury rehabilitation?

ANSWER

The role of the Occupational Therapist on the brain injury rehabilitation team is to maximize functional independence. The Occupational Therapist looks at all the activities that a person was able to do prior to the injury, assesses the areas of weakness, and develops a program to improve those areas or implements compensatory strategies.

The Occupational Therapist addresses upper extremity functioning in terms of strength and coordination, cognition and perceptual skills including memory, organization, reasoning and problem solving, functional mobility, and activities of daily living. The latter includes all of the activities that we take for granted such as getting out of bed, bathing, dressing and eating, to the more complex activities such as independent living, meal planning, grocery shopping, cooking, home management and working. When addressing activities of daily living, the Occupational Therapist looks not only at the physical barriers that the individual needs to overcome but the cognitive barriers, as well.

QUESTION:

My friend was caught in the crossfire of a gun fight and was shot in the head. His brain injury was serious but he is making progress. He is re-learning basic activities like eating, dressing, and other self-care things; however, he could do more with the proper therapy. Unfortunately, he is being discharged from the hospital this week. How can I help my friend continue to recover? Is there anything that his family and friends can do to help, even though we are not therapists?

ANSWER

There is plenty that you can do to help, and in many ways, depending upon your relationship with your friend, your effectiveness in promoting functional advances over time can be more powerful than that of the therapist. Coming home after injury to the brain is a very critical time. During this period of re-entry, old routines are going to be more difficult to manage independently, and the emotional reaction to this reality is always a very strong one. Surely, this is an area where you can play a very meaningful role in providing support, encouragement, and promoting a feeling of hope. Over time, differences in your friend will become increasingly clear and even with the best therapy, changes in behavior, mobility, cognition, etc. will exist. What is key is the creation of new life roles and routines -- ones that offer meaning to life. This objective surely transcends any single rehabilitation profession, and surely can be promoted by any loving friend or family member.

QUESTION:

When my brother comes home from the hospital, he still will need some formal therapies; however, I would like to help him resume a somewhat "normal" life. He has recovered enough from the brain injury to participate in some non-therapy activities. I want to help him get back into everyday activities like work, socializing, and recreation. What can I do to help my brother with "community re-entry?"

ANSWER

"Formal" therapy should always promote community re-entry and should incorporate family members in the process. Rehabilitation is a process whereby a person is helped to re-establish old routines and interests and is assisted in the development of new roles when necessary. At the end of the process, the person needs to meaningfully participate in the world (work), be able to experience pleasure through playful activities (i.e., play), and experience a shared commitment with others (love). In essence, we are all working toward these goals whether injured or not. So, if you conceptualize rehabilitation in this way, there is indeed a lot you can do to help. Encourage him to gradually resume those interests (social, vocational, recreational) that have been enjoyed in the past, and help your brother to sharpen his awareness as to what is and is not possible. In turn, modifications can be made, new activities established, and over time, your brother can feel that life again is meaningful.

QUESTION:

My family member is in the hospital after a car crash and will be discharged soon. While the hospital is recommending a nursing home, my family feels we should look into rehabilitation programs. What should we look for in a brain injury rehabilitation program?

ANSWER

The hospital may recommend a nursing home if they feel that your family member will not be able to tolerate at least 3 hours of therapy a day. However, you are your family member's best and most important advocate. This disaster has thrust you into a difficult position where you will have to balance what the family wants and what the experts and funding agencies can or are willing to deliver. Don't be afraid to appeal a negative decision; be vocal but civil.

In an acute brain injury program you should look for a complete service system that includes: physical therapy; occupational therapy (deals with dressing, upper body functioning, everyday problem solving); speech therapy (deals with speech, swallowing, cognition); behavioral therapy (helps the person learn to control his own behavior, problem solving and executive functioning); and a board certified physiatrist (a doctor who specializes in rehabilitation medicine). The program also should have available a neuropsychologist, neurologist and psychiatrist. It's a real plus if the program has some sort of substance abuse program, as there are a number of persons injured while under the influence of alcohol/drugs. Also, check to see if the program offers family education. You and your entire family need to learn about brain injury, particularly so that you can understand the changes in your family member's behavior and personality.

You also should check to see if the program is JCAHO or CARF accredited. These accreditations insure a high quality of care and services. Ask to reveiw the program's outcomes. These are ratings of recovery of function in several areas, ranging from dressing to memory to mobility. What you really want to know is: how talented is the staff? Did they graduate yesterday or do they have experience in neurorehabilitation?

If your family member is a child you may also look for child-life services (people who play with the child and help him accommodate and understand what is happening), and some sort of academic servcies. You will want a favorable client-to-staff ratio (1:1, 2:1, or 3:1 is acceptable). Meet the staff who provide the care and treatment -- you must trust them otherwise you will not feel comfortable leaving your child in their care. Many acute pediatric neurorehabilitation programs offer you the option of sleeping in your child's room; you may wish to inquire about this option. One word of caution: if you have other children at home don't abandon them; get back home and resume the semblence of family life as soon as you feel comfortable with your child's rehabilitation care.

Finally, recovery from a brain injury takes a lot of time (sometimes years). Recovery can range from nearly complete to permanent disability. In some cases the person with the brain injury may require transfer to a post-acute program that focuses on long-term cognitive and behavioral aspects of recovery. No matter which way it goes, you must take care of yourself because if you burn out you will not be there for your fmaily member when they really need you, after the rehabilitation has ended and they return home.

Insurance companies in each state are regulated by the State Department of Insurance or a department with a similar name. If your appeal is denied by the insurance company, you can lodge a complaint with the State Department of Insurance. In this case you would send a letter to Insurance Commissioner. Your letter should provide information regarding the insured’s medical condition (brain injury), the fact that a physician ordered the therapy that you believe is covered by your policy, an explanation of the steps you have taken with your insurance company, a description of the insurance company’s denial and an explanation as to why you believe the service is covered by your policy. You should attach a copy of the pertinent pages of your policy and a copy of the insurance company’s denial letter.

Seek Other Sources Of Funding

First, you may want to see if there is another insurance company that will cover cognitive rehabilitation and switch to that company. However, prior to making a change, one should be sure that one has written evidence from that insurance company that they will cover the services that are related to a "prior condition" (brain injury). Other possible resources might be the State Department of Rehabilitation (which goes by different titles in different states), Medicaid (if the person has passed his/her 21st birthday) or the public school system (if the person is between 0 and 21 years of age). If a person is injured prior to graduation, the school district is responsible to establish an Individual Education Plan (IEP) that meets the student’s educational needs. Educational needs encompass not only academic subjects but also broad areas such as the ability to learn, communicate, process information, and socialize. If the school district did not establish an IEP and the person graduates, one can still request that the school district provide appropriate educational services if you can demonstrate that the failure to provide them before graduation has caused harm to that person. In this instance, harm would be impaired ability to learn, communicate, etc. The Community College system may be another resource within the public education sector. Section 504 of the 1973 Rehabilitation Act mandates that the community colleges provide accommodations and modifications to the curriculum to meet any special needs of students. Some community colleges have actually established educational programs for those with brain injuries. Others provide special services and assistance within the classroom. Finally, you may want to identify "interagency agreements" to provide services. In many states various state departments, such as the Department of Education and the Department of Health, The Department of Human Services and the Department of Rehabilitation, have created agreements regarding who pays for what services. The interagency agreement usually indicates which department holds the ultimate responsibility to provide a particular service. The agreement can be obtained from any of the appropriate departments under the Freedom of Information Act.

QUESTION:
After a long hospital stay, my son is coming home. He will need long-term rehabilitation; however, we have nearly reached the "cap" on our insurance coverage. What should we do when the insurance runs out? Are there other sources of funding for rehabilitation?

ANSWER
In general, funding for people with disabilities is available through Social Security and state Medicaid and Medicare programs. By contacting your local Social Security office, you can find out about these programs and determine if you are eligible. If you qualify for Social Security funding, you can receive monthly checks to help cover living expenses. Medicaid and Medicare are programs that cover medical expenses for people without private insurance who qualify. It is a good idea for people anticipating long-term or permanent disability to investigate these (and related) government programs.

Funding for rehabilitation therapies may be available if the benefits to be gained from the therapies are related to the mission or purpose of the funding source. For example, funding for rehabilitation therapies may be available through your state vocational rehabilitation agency if your son is intending to pursue gainful employment and is declared eligible for vocational rehabilitation services. If your son became disabled before age 22, he may also qualify for services through the Division of Developmental Disabilities.

Unfortunately, it takes time to investigate possible funding sources, and sometimes you will be referred to one place, then another, then another until you get to the place that actually has the funding that is needed. It may take perseverance, but it will be worth it if you do get the funding.

It may also be necessary to get funding from several sources and "blend" the funding. Voluntary organizations may be a source of some funding. In my experience, funding for rehabilitation therapies has been provided by such organizations as Catholic Social Services, the Catholic Archdiocese, and scholarship funds through rehabilitation hospitals. Even if a voluntary organization has not provided funding in the past, I would recommend contacting one whose mission is compatible with rehabilitation. In addition, voluntary organizations may be a source of funding for other rehabilitation needs that will enhance the rehabilitation therapies, even if they cannot pay for the actual therapies. For example, a local Rotary Club contributed a significant amount of money to an individual to build a wheelchair-accessible ramp on the outside of her home. When in doubt, ask!

Harvey Jacobs, 440 Greenwood Avenue, Wyncote, PA 19095, (215) 576-6269, e-mail: [email protected]

OR

Cathy DeMello, The Clubhouse, c/o Dayle McIntosh Center, 210 W. Cerritos, Bldg #6, Anaheim, CA 92805, (714) 956-7150, e-mail: [email protected].

QUESTION:
Our son has been discharged from five nursing homes in the past few years due to unmanageable behavior. He has emotional outbursts, is non-cooperative with staff, swears at staff and patients, and has been known to hit other patients. We cannot provide the care he needs at home, nor are we able to manage his behavior. What can we do?

ANSWER
Behavior changes frequently occur as a result of traumatic brain injury, and so many brain injury programs offer treatment to persons with mild behavior problems. However, when the behavior problems are severe, as in your son’s case, the best setting is a residential program specifically designed to treat individuals with behavior problems following brain injury. These specialized behavioral programs have staff members with expertise in behavior management and the structure and array of services to help the individual learn effective behavior. To find out where these behavioral programs are located, you may wish to contact the Brain Injury Association, Inc. at (202) 296-6443 and/or review the B.I.A. National Directory of Brain Injury Rehabilitation Services. (If at all possible, visit the programs to decide which one of them you believe will be best for your son.)

QUESTION:
I have been referred to my local center for independent living. What can I expect to see there, and how can they help someone with a brain injury?

ANSWER

The Centers for Independent Living (CIL’s) offer services to people with disabilities who want to maximize self-sufficiency, independence, and community integration. Many CIL’s employ people with disabilities, from peer counselors to administrators, and CIL’s operate by consumer direction. The core services provided at a Center for Independent Living include:

1. Information and referral regarding community resources, such as accessible housing, transportation, and affordable services.

2. Independent living skills training in areas such as money management, mobility, and personal growth. Some can help with finding and hiring personal assistants, too.

3. Peer counseling to assist consumers in setting and pursuing goals, and maintaining overall well-being.

4. Systems advocacy and individual advocacy to increase public awareness of disability issues and increased opportunities for people with disabilities. The CIL is a good source of information on the Americans with Disabilities Act (ADA).

Centers for Independent Living operate locally, and many services, besides the core activities, are offered based upon local needs. Some CIL’s provide transportation on a limited basis, others provide transportation vouchers to ease the expense. Some CIL’s host special support group meetings, sometimes for people with brain injuries, and some CIL’s offer periodic recreation events.

For people with brain injuries, as well as others with disabilities, the Center for Independent Living is a good source of information on the community and how to live in it as self-sufficiently as possible. The consumer-driven CIL provides people with disabilities the opportunity to help themselves and each other.

ANSWER
Your question presents some interesting problems related not only to the treatment of persons following severe brain injury, but also to some of the common problems with misdiagnosis of neurological conditions after severe brain injury. Personally, I think it would be highly unlikely that your mother is truly comatose three months after her initial injury. Specifically, true coma generally does not last for more than three to four weeks. Typically, after this, one of three things occurs: the person either dies, transitions into a so-called vegetative state or regains some level of consciousness. The fact that you report that you have seen your mother blink her eyes, suggests that her eyes are open at times which is not congruent with a comatose state. If there is any awareness evident, based on your observations of interactions that your mother has with other professionals or with you, then she is neither comatose or vegetative but, clearly, conscious even though she may be severely disabled.

A vegetative state is a condition that can be seen following trauma that simply involves the person being arousable but unaware. That is , they have sleep/wake cycles and periods where their eyes are open as well as closed, but remain cognitively unaware, either internally or externally, of what is going on. In a comatose state, however, there is neither arousal or awareness. Eyes, as a rule, remain closed at all times.

The general approach to patients at the severe end of the functional spectrum following brain injury is to provide aggressive neuromedical and rehabilitative care in an attempt to facilitate emergence from these compromised levels of neurologic function, as well as to minimize and/or avoid complications associated with these states. "Coma stimulation program" used to be a very common phrase used by health care providers in the field of brain injury rehabilitation to describe the therapeutic efforts made at treating patients who were vegetative or in a minimally conscious state. This term has fairly much fallen out of favor due to several factors. Firstly, most practitioners who have been involved in treatment of persons with severe brain injury have not found this technique to be beneficial in terms of altering either the rate or eventual plateau of neurologic recovery following severe brain injury. Secondly, there are many other factors that need to be looked at in the overall treatment programs for such individuals, with sensory stimulation really being an optional therapeutic modality that, at least based on present data, has not been demonstrated to be effective in the manner in which it once was so strongly lobbied for. Certainly, it is important to provide ongoing objective assessments of the person’s neurologic level of function. "Coma Stimulation" can certainly aid in this area. It is critical to understand, however, what it can and cannot do for both clinicians as well as family members.

There are many more important neurologic, medical, and rehabilitative interventions that one should make sure are being administered to a family member following any severe brain injury that leaves them comatose, vegetative or minimally conscious. Such interventions include removal of all sedating medications (as possible); making sure that the individual has no treatable medical and/or neurosurgical complications such as epilepsy or communicating hydrocephalus; treating patients, particularly those in a minimally conscious state, with medications to improve arousal and/or slowed motor responses (so-called bradykinesia). Caregivers must also have an eye to good maintenance care aimed at maintaining skin integrity, range of motion, and optimal organ system function. Only through a concerted team effort can such individuals really be optimally cared for and their potential for further improvement, without concurrent morbidity, augmented.

QUESTION:
How does the duration of a coma affect a patient’s recovery and prognosis? For example, does a shorter coma mean there is less brain damage, thus recovery will be quicker and stinger? Does a longer coma mean more there is more severe brain damage and a poorer prognosis?

ANSWER
Typically, coma is associated with more severe diffuse axonal shear injury although there are cases of more localized brain injury that may result in coma and, at least in cases where the underlying brain damage is felt to be mainly diffuse in nature, one can conclude fairly reliably that the longer the duration of coma, the more severe the brain injury and the poorer the prognosis. The duration of coma, assuming it is neurologically based and not due to chemically/artificially induced coma, is highly correlated with the overall extent of brain injury as well as the long-term neurologic/functional prognosis. It should be noted, however, that of the more important prognostic markers, the duration of coma is certainly not the most important from an overall assessment standpoint. The duration of post-traumatic amnesia (day-to-day ability to remember things) has been shown to be the most sensitive prognostic indicator for long-term functional outcome relative to other early prognostic factors.

QUESTION:
I have heard the terms vegetative and vegetable referring to persons in a non-responsive state following severe brain trauma. Are these actual medical terms, and if so, what do they mean?

ANSWER
Thanks for your question regarding vegetative and vegetable in reference to persons in a non-responsive state following severe brain trauma. The term vegetative state was first coined in 1972 by Drs. Jennett and Plum. The term was meant simply to reflect a state in which there was return of so-called vegetative function, such as normalization of sleep/wake cycles among other basic bodily functions. This was described as a transition state between coma, where there is no arousal and no awareness, to some level of consciousness in which there was both arousal and at least some degree of awareness. The vegetative state, per se, is associated with arousal in the absence of awareness. That is, patients who are in a vegetative state of sleep/wake cycles generally are not dependent upon external mechanical life support to sustain basic life processes. As a rule, after a severe brain injury, a patient progresses through stages of emergence with coma being the lowest neurologic level of function, transitioning subsequently into a "vegetative state," and from there progressing to consciousness. Often times this term has been confused with the term "vegetable." The term never was meant to imply anything pejorative regarding the patient and/or his prognoses. Many patients following severe brain injury who have reasonably good to even good outcomes make transitions through a vegetative state that lasts for some period of time. Certainly, there are those patients who remain in a vegetative state and never emer_e from the state, although these numbers are extremely small, e.g., probably less than 3% of all persons with severe brain injury. There never has been to my knowledge a "medical term" that labeled anyone as a "vegetable." This latter type of language is certainly pejorative. Because of the potential confusion of the terms "vegetative" with "vegetable" some people have advocated that an alternative phrase to "vegetative state" be developed. Because vegetative state is so entrenched in the neurologic and neuromedical literature, many believe that such an effort may be in vain and the more logical route would be to simply better educate professionals as well as lay people regarding the true meaning of the phrase.

QUESTION:
Does someone in a vegetative state ever regain consciousness or wake up?

ANSWER
Patients who are in a vegetative state may or may not regain consciousness. Based on newer terminology advocated by both the multisociety task force as well as, more recently, the Aspen workgroup, persons who sustain trauma and remain vegetative for a year or more can be said to be "in a permanently vegetative state." Such individuals, at least by probability, are not expected to emerge from a vegetative state; however, it must be understood that one can never totally rule out the possibility of emergence. Specifically, even though the term "permanent" vegetative state has been advocated for, this can never be said with 100% certainty, and there have been isolated reports (not all of which have had adequate medical documentation) of persons emerging from vegetative states beyond "permanency." As a rule, however, most individuals who enter into a vegetative state following trauma as opposed to degenerative neurologic conditions such as Alzheimer’s disease will (assuming that they live) emerge from a vegetative state at some point post-injury. The longer an individual is vegetative, inherent in the implicit degree of brain damage that has occurred, the more likely it is that he will have a more significant rather than less significant level of neurologic impairment upon emergence and the greater degree of disability it portends for the long-term outcome of that individual.

QUESTION:
My brother is comatose. Although I've seen it happen all the time in movies, I've been told that comatose people do not simply wake up one day and feel like their old selves. What are the levels or stages of coma, and how long does it take to fully wake up?

ANSWER
The Levels of Cognitive Functioning Scale, which was developed by brain injury treatment staff at the Rancho Los Amigos Hospital in Downey, California, is a tool for describing a patient's behavior after a brain injury. The scale is applicable in the first weeks following the injury, during rehabilitation. The time it will take for a patient to progress through the levels of functioning cannot be predicted. One person may move quickly from lower levels of functioning to higher levels, while another person progresses quickly at first only to plateau later.

Below is a summary of the Levels of Cognitive Functioning Scale from the Rancho Los Amigos Hospital:

References:

1. Greenery reprint of the Scales of Cognitive Functioning, with permission of Ranchos Los Amigos Hospital.
2. Hagen, C., Malkmus, D., Durham, P. "Measures of Cognitive Functioning in the Rehabilitation Facility." Brain Injury Association, Inc. 1984.
3. Sander, A. (2002). The Level of Cognitive Functioning Scale. The Center for Outcome Measurement in Brain Injury.

ANSWER
Yes! Research has repeatedly demonstrated that 1/3 to 1/2 of individuals who sustained traumatic brain injuries were intoxicated (at least the legal limit) at the time of injury. These individuals were more likely to be intubated and have respiratory distress, have greater severity of injury, greater incidence of death, lower cognitive status at time of discharge, and suffer greater lengths of post-traumatic amnesia.

QUESTION:
As a drug and alcohol counselor at an inpatient program, I do not usually work with people with brain injuries. However, I have been assigned a patient with traumatic brain injury and cognitive deficits, and I need some advice on how to help him. Our facility uses a 12-step approach to rehabilitation with individual counseling and educational groups. Is this traditional approach appropriate for someone experiencing the effects of traumatic brain injury? Are there special provisions we should make for this patient?

ANSWER
The typical traditional approach of substance abuse treatment for survivors of traumatic brain injury has not successfully addressed all the issues for this population. Typically, survivors leave these settings because of their inability to successfully work with a counselor or work within the rules imposed. They end up back in the same situations and cycle back into substance abuse treatment programs. Recently a novel team approach was tried in five states to help the survivor achieve better life outcomes. ICON Community Services located in Northern Virginia was one of the sites. The special provisions made for individuals with traumatic brain injury were designed and implemented within an innovative framework which stressed teamwork.

The approach started with an educational component for survivors about substance abuse issues and rehabilitation, etc. The survivors of traumatic brain injury then helped to set up a team of people who supported them. These teams were as varied as the consumers’ needs for ongoing services and support. The teams met on a monthly or bimonthly basis to discuss all aspects of the survivor’s life. A standard agenda was used to review progress or issues in ten key life areas. This kept the meetings to an acceptable time frame for all of the professionals and nonprofessionals who were involved.

Furthermore, team meetings reduced the potential for fragmentation of efforts. It helped the substance abuse counselors to receive education about traumatic brain injury. The other professionals could, in turn, assist the substance abuse counselor by positively influencing the survivor to achieve a clean and sober approach to life. This ongoing team meeting reduced conflict and manipulation by the survivors across service providers. The substance abuse counselor could then make a determination for the best course of action.

A survivor can benefit from all of the services of an inpatient substance abuse setting. He or she can benefit from individual or group therapies, educational groups and 12-step approach when the substance abuse counselor is not alone to figure out all of the dynamics and issues. What makes the critical difference for success in these very complex instances is a coordinated team effort. It helps the survivor to address cognitive, physical rehabilitation, psychological, employment, housing, legal and many other issues with professional and nonprofessional guidance.

QUESTION:
My doctor strictly advised me not to consume alcohol (or any other non-prescription drugs) since my brain injury. He said the negative effects of alcohol and drugs would be magnified several times in my case, since my brain sustained permanent damage. What exactly does this mean? Would a few beers cause further brain damage?

ANSWER
Permanent brain injury typically results in fewer resources to deal with the additional impairing effects of alcohol. Alcohol can impair judgment which may already be clouded by the brain impairment (in other words, the poor judgment which may be a result of brain injury may be magnified by the dulling effects of alcohol). If alcohol impairs judgment, cognitive abilities and sensory-motor functions, which already may be negatively affected by the brain injury, it can increase the probability of additional traumatic brain injury. In such a case, the brain is more vulnerable to additional impairment.

Alcohol has a direct impairing effect on brain tissue in the following ways:

Use of alcohol, typically over long periods of time, can actually destroy brain cells (neurons). It also can directly affect the potency and effectiveness of medications and lower seizure thresholds. For all of these reasons, it is not advisable for anyone with a brain injury to drink alcohol or use other non-prescribed drugs.