Brain Injury Professional, vol. 5 issue 4

BR A IN INJURY professional vol. 5 issue 4

The official publication of the North American Brain Injury Society

Behavior!

Respecting individuality and promoting ability

Ain’t Misbe h avin g!

Neurobehavioural Beg in n in gs : The Kemsl ey U n it Neurobehavioral Crisis Hospital iz at io n : On the Need to Provide Spe c i a l i z e d Hospital Brain Inj ury Crisis Programmin g Managing More Than Medi cat io n s Interview with Stanley “Doc” S eat o n Applied Behavior Analysis Eva l u a t i o n Strategies And Neurorehabil it at io n BRAIN INJURY PROFESSIONAL

1

LAKEVIEW ...

It’s About Life!

From Coma To Community

Long-Term Acute Care Hospital Specializing in Coma Recovery Neurobehavioral Programs • Children • Adults Special Education Accredited School Grades 1 - 12 Rehabilitation and Transition Programs Community Integrated Residential Programs Supported Apartments and Home Programs Outpatient Clinics

The Lakeview AfÀliated Programs - now located in New Hampshire, Maine, Rhode Island, Wisconsin and Virginia.

Call 1-800-4-REHAB-1 For More Information or Visit our Web Site at: www.lakeviewsystem.com

contents

BRAIN INJURY professional vol. 5 issue 4, 2008

The official publication of the North American Brain Injury Society

north american brain injury society

departments 4 President’s Message 6 Guest Editor’s Message

chairman Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family liason Julian MacQueen executive vice president Ronald C. Savage, EdD executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Joyce Parker graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes

26 bip expert Interview brain injury professional 32 Legislative Round-up 34 Non-profit News

publisher J. Charles Haynes, JD Editor in Chief Ronald C. Savage, EdD Editor, Legislative Issues Susan L. Vaughn founding editor Donald G. Stein, PhD design and layout Nikolai Alexeev advertising sales Joyce Parker

EDITORIAL ADVISORY BOARD

features 8 Ain’t Misbehaving!

BY HARVEY E. JACOBS, PhD 12 Neurobehavioural Beginnings: The Kemsley Unit

BY PETER EAMES, CONSULTANT NEUROPSYCHIATRIST (RETIRED) 16 Neurobehavioral Crisis Hospitalization: On the Need to Provide

Michael Collins, PhD Walter Harrell, PhD Chas Haynes, JD Cindy Ivanhoe, MD Ronald Savage, EdD Elisabeth Sherwin, PhD Donald Stein, PhD Sherrod Taylor, Esq. Tina Trudel, PhD Robert Voogt, PhD Mariusz Ziejewski, PhD

editorial inquiries

22 Managing More Than Medications

BY DAVID E. ROSS, M.D., AND LISA ENDY CLEVINGER, M.S.W., L.C.S.W.

Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787 Website: www.nabis.org Email: contact@nabis.org

28 Applied Behavior Analysis Evaluation Strategies

advertising inquiries

Specialized Hospital Brain Injury Crisis Programming

BY ROBERT L. KAROL, PhD, ABPP AND ROBERT SEVENICH, M.D., J.D.

and Neurorehabilitation

BY MICHAEL P. MOZZONI PhD, BCBA, CBIST

Joyce Parker Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787

national office

North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2008 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com

BRAIN INJURY PROFESSIONAL

3

president’s message

Ronald Savage, EdD

4

BRAIN INJURY PROFESSIONAL

Behavioral challenges and brain injury go hand-in-hand. It wasn’t that long ago that rehabilitation programs frequently “screened out” clients with brain injuries who had behavioral problems. Whether these behavioral challenges were caused by damage to specific brain regions (e.g., frontal-temporal injuries), or caused by pre-injury factors (e.g., substance abuse), or any combination thereof, unwanted behaviors can be devastating and if not totally debilitating to the individual.

As Dr. Jacobs points out in his lead article, we are driven by our behaviors and our behaviors are dynamic and evolving: “Behavior constitutes the individuality and the sum of our actions, especially as they are represented to others. It is the dynamic product of the complex interactions from within and around us, and much like life it is constantly changing.”

The key point is to conceptualize behavior not as a “noun” which is static and unchangeable, but as a “verb” which is dynamic and changeable.

Interestingly, our understanding of behavioral challenges after brain injury has also been a dynamic and ongoing process. From the days of behavior modification to applied behavior analysis to

cognitive-behavioral therapy to neurochemical medications, our understanding of the inter-relationships among multiple factors has influenced how we see behavioral challenges after brain injuries, as well as how these factors need to influence our clinical treatment. Dr. Stan Seaton, a ground breaking psychiatrist, recognized early on that positive behavioral services and supports are cornerstones in successfully helping individuals with brain injuries rebuild meaning into their lives. As Dr. Seaton states in his interview, “I’ve always believed that nothing happens unless there is loving care and respect between people regardless of their roles, abilities or disabilities, or pathways in life.”

This issue of the Brain Injury Professional provides our readers with a broad array of informative articles on behavior and brain injury. NABIS wants to thank Dr. Harvey Jacobs for tackling such a mis-understood topic. We thank Dr. Jacobs for serving as our Guest Editor of BIP and our other authors for providing us with an issue that is both enlightening and practical.

Ronald Savage, EdD

Purposeful Living.

Meaningful Life. &OR !DULTS WITH #OGNITIVE $ISABILITIES

David Seaton, Founder/CEO DS TC TX COM s 0 / "OX s -ANCHACA 4EXAS

LiveOakLiving.com

guest editor’s message

Harvey E. Jacobs, PhD Behavior is the commerce of every living thing on this planet. Simply stated, behavior is: The actions or reactions of a person [or animal] in response to external or internal stimuli1. People do it, animals do it and, if you consider the works of Michael Pollan, among other botanists, even plants do it2! Yet, while we all constantly experience behavior it remains one of the most difficult concepts to truly understand.

Behavior change is a key component of rehabilitation3. We help people walk again, talk again, think again and otherwise improve their performance and abilities after a brain injury. To do so we rely on many different philosophies and interventions ranging from surgical and nonsurgical medical treatment, medication, occupational therapy, physical therapy, speech/language pathology, psychology, activities therapy, vocational rehabilitation, case management, education and a host of other approaches. Yet most of the time we don’t think of this as behavior change, but simply as rehabilitation.

Within our field, behavioral intervention has presumably addressed maladaptive behaviors and treatment refractory cases. A neurobehavioral treatment culture has evolved to address many of these issues and it is not unusual to see journals publish special issues about behavior 6

BRAIN INJURY PROFESSIONAL

that similarly focus their attention. This special issue takes a different approach by recognizing the totality of behavior. The articles in this issue note that the manner we conceptualize situations and approach people can have just as a significant role on both positive and negative behavior as the brain injury itself.

The opening article Ain’t Misbehaving presents a broad analysis of behavior and brain injury, discussing the wide range of interactive variables that produce all forms of behavior. It suggests that focusing on the variables that effect behavior is usually more productive than focusing solely on the behavior of interest. All parties generally win when such strategies are used to facilitate ability over disability.

Dr. Peter Eames provides a historical perspective in his article titled Neurobehavioral Beginnings: The Kemsley Unit which he helped found. The Kemsley Unit became a template for many other neurobehavioral programs around the world. However, as noted by Dr. Eames, positive relationships and supports played a much more important role in each client’s recovery than the use of time out and other restrictive interventions frequently ascribed to the program.

There clearly are times when extraordinary measures are required to address situations of extreme behavioral decompensation. Traditionally this results in involuntarily admission to psychiatric crisis units. Such admissions may address the immediate problem but often promulgate long-term challenges due to the focus of such programs. Drs. Robert Karol and Robert Sevenich offer an alternative framework based on their own work in their article titled: Neurobehavioral Crisis Hospitalization: On the Need to Provide Specialized Hospital Brain Injury Crisis Programming. They also suggest a number of other steps that can be considered to more successfully address crisis situations in the absence of programs such as theirs.

David Ross, MD and Lisa Endy Clevinger, LCSW provide practical guidance in working with individuals who experience disability following brain injury on an outpatient basis in their article

Managing More than Medications. While focusing on the special steps and considerations required to promote successful medication management, their guidelines also resonate with many other therapeutic and disciplinary approaches. Rather than blaming the patient for non-compliance, Ross and Clevinger demonstrate how understanding and working within a person’s resources and abilities can potentiate success.

We are gratified to have an interview with Stanley “Doc” Seaton, MD, founder of the Tangram Network, one of the first neurobehavioral programs in the United States, in this issue. Doc is truly one of the pioneers and beacons in the field and remains highly influential despite retiring a decade ago. He reflects on the truly important variables in successful neurobehavioral programming which involve collateral respect, meaningful lifestyles and dignity for all involved parties.

In Applied Behavior Analysis Evaluation Strategies and Neurorehabilitation, Michael P. Mozzoni, PhD, illustrates single subject evaluation strategies that can be used by all disciplines. These techniques are particularly suited for the individual differences that each person and each brain injury presents. Mozzoni expands common perceptions that behavior analysis is only a field that is interested in the manipulation of antecedents and consequences that effect behavior to a powerful technology that incorporates diverse tools that integrate well with other rehabilitation approaches.

In closing, I would like to thank each of the authors for the significant time they devoted to this special issue and I hope that each of these articles is of interest and support to your own work.

Harvey E. Jacobs, PhD REFERENCES 1.

2.

3.

The American Heritage® Dictionary of the English Language, Fourth Edition, Houghton Mifflin Company, Boston, Massachusetts, 2006.

Pollan, M. The Botany of Desire. Random House, New York, New York (2001).

Wood, R. Ll. Brain Injury Rehabilitation: A Neurobehavioral Approach. London, Croom Helm, 1987.

WHAT MAKES

a personal injury law firm different?

RICH VANDERWAL

WE

Rehab Consultant

WERE

DIANNE HENDERSON R.N., B.A. Psych., M.Ed.,

THE

Medical Consultant

FIRST

CHARLES GLUCKSTEIN

OUR

in combining more than

J.D., LL.B

a century of legal expertise BERNARD GLUCKSTEIN,

with medical & rehab

QC

TURN WE ENSURE THAT

you and your loved ones receive the absolute best in health care delivery.

Gluckstein

“OUR MULTIDISCIPLINARY teams’ goal is to protect your rights while advocating for maximum compensation and recovery of lifestyle.”

P E R S O N A L

ARE

IN

consultants.

& A SS OCI AT E S

WE

EXTENSIVE

knowledge and skill sets in the areas of spinal cord and brain injury allow GLUCKSTEIN & ASSOCIATES LLP to consult directly with all of the healthcare providers.

I N J U R Y

LLP

L A W Y E R S

GLUCKSTEIN & ASSOCIATES LLP, and there is no such thing as business-as-usual here.

TELEPHONE

416.408.4252

toll-free

1.866.308.7722

E-MAIL

info@gluckstein.com

WEBSITE

www.gluckstein.com

Ain’t Misbehaving!

by Harvey E. Jacobs, PhD

Behavior is generally recognized as the most common yet most misunderstood aspect of the human condition. To some people behavior is inferred when somebody is acting out, or responding in a manner that is not acceptable to others. Is it possible to mis-behave if there is nobody else around to observe or experience its effects? And just what constitutes mis-behavior?

Some people will identify absolute moral codes to behavior while others note the relative nature of its effects. Is it always wrong to kill? Is it always right to indicate acceptance and affection of another? Just what the heck does “appropriate” mean anyways?

To others, the concept of behavior constitutes super-human feats or note-worthy abilities. We honor those who behaved unexpectedly or who placed themselves in harm’s way while doing the right thing for others. Sports heroes are honored for breaking old records. Writers, singers, artists and others gain acclaim for breaking new venues and new barriers.

But what about the average guy? You know, the one who gets up every morning, does what he is supposed to do, goes about his business without “inappropriately” bothering others.

Does this constitute behavior? Of course it does. In fact everything we do constitutes behavior. Taken from no less of an authorative source than the American Heritage Dictionary, behavior constitutes: The actions or reactions of a person [or animal] in response to external or internal stimuli1.

For too many years the field of brain injury rehabilitation maintained dubious disciplinary distinctions regarding cognition and behavior. There have been vociferous debates and arguments regarding cognitive vs. behavioral approaches; as if 8

BRAIN INJURY PROFESSIONAL

a forced dichotomy existed. Effective behavioral change strategies were seen as temporary or “not real treatment” by some people because the behavior of focus would change when the strategy or developed supports in one’s life stopped. Cognitive strategies were disdained by functional empiricists because of their conceptual rather than functional nature and difficulties generalizing across environments. Things that did not fit into an ABC template were suspect. Some viewed learning as the province of cognitive strategies whereas stopping “bad behavior” as the domain of behavioral approaches. In lighter moments there were the jokes that “Behaviorists can’t think” and “Cognitivists think they can!” In the process, people were missing the forest for the trees and often arguing about the same difference!

Conceptualizing Behavior

Behavior constitutes the individuality and the sum of our actions, especially as they are represented to others. It is the dynamic product of the complex interactions from within and around us, and much like life it is constantly changing. How do I infer that you are “thinking?” Most likely because you answer a question, produce a paper on a topic, choose one of several offered choices, etc. I don’t actually see you think, but I see (or can infer) the product of your thinking by your behavior.

Observing and documenting behavior is an ongoing process because our behavior is always changing. What you were doing just before you began reading this article is different than what you are doing now and will be different from what you will be doing several minutes, even several seconds from now.

So what causes behavior? Many things – probably more than ing reasonably to different circumstances. In fact, at the time you can or may want to consider. We can start with environ- such “inappropriate” behaviors may be very adaptive for the permental factors such as the antecedents (cues) that precede behav- son engaging in them. You would probably do the same in the ior, the consequences that follow behavior, the overall environ- same situation and under the same circumstances. mental circumstances in which the behavior is occurring; and the contingencies between these three elements. Is it noisy or quiet, Choice and Responsibility familiar or unfamiliar, supportive or hostile, static or changing, This brings up several issues, the first of which is the timeless free crowded or abandoned; and what about all the shades of gray in will vs. determinism – personal responsibility debate. This debetween? bate generally argues between free will, noting that people make Neurological impairments and their corresponding cognitive unexpected choices in light of overwhelming odds, so behavior and perceptual disabilities clearly host a wide range of salient cannot be determined and by making choices people are responfactors that effect behavior. We are all aware of the challenges sible; vs. the concept that much of our behavior is determined that changes in attention, concentration, awareness, memory, by the many prevailing variables that effect it, even if we don’t initiation, organization, abstraction, sequencing, stamina, vi- understand them all. This side of the argument often notes that sion, smell, taste, touch, and a multitude of other factors unique while we clearly cannot always accurately predict the weather, to the individual can proffer on behavior. Now add to this the few of us would ignore the environmental and climatological facinteractive and integrative effects that these multiple factors can tors that produce it. Subsequently, if any part of our behavior is have on any instance of behavior, let alone across the continu- determined, can we be responsible for such behavior since it was ing cadence of life. Remember, it is not how you experience the the product of a wide range of variables, many of which were beworld through your “apparatus” that is important, but how the yond our control and hence not of our choice or responsibility? person of focus experiences the world through theirs.

Sorry, I don’t have an easy answer on the free will vs. deterEffects of physical impairments including mobility, paresis, minism debate, though I lean towards determinism as part of paralysis, damage to other body parts, pain and physical fatigue the overall equation. What we don’t know about ourselves as a all play their roles, as do pre-morbid conditions. Throw the ef- species and how we fit into the “big picture” far exceeds what we fects of medications into the mix. Is it any wonder that each do know – sort of an existential agnosia. person and brain injury is unique?

The concept of personal responsibilPast life experiences; work and academic ity may also be more accurately framed in The concept of “behavior” is not histories; personal resources – financial, so- just relegated to “bad things” that terms of situational accountability. This cial and community; goals; expectations; people do, but represents the sum of account focuses on the “rules for the road” cultural mores; personalities; family dynamthat a person may be expected to follow in everything that we do. People don’t a given situation as well as their ability to ics; support circles; spiritual orientation or lack thereof; heritage; and innumerable “misbehave;” they behave in relation do so. For example, nobody cares if I sing other factors all influence behavior and each to a diversity of internal and external in the shower because they can’t hear me. add their unique flavor to the effects of yet On the other hand, if I sing in the library I factors. other factors. could get in trouble given their basic rules of Changes in daily routines, especially changes in ability or in- being quiet and respecting the ability of others to concentrate. If ability to work, go to school, or get around the community can you want to drive you better be able to handle all of the variables have profound effects. What happens when a job that defined involved on the road, or stay off; and if you don’t stay off you your life’s focus for so many years is lost; when going to the store may get pulled off by your friendly state trooper (for the benefit for a gallon of milk now takes all day since you can’t drive and of the rest of us). Play golf at putt putt? No problem. Play golf have to rely on public transportation – let alone the fact that you on the PGA circuit? Only if you’re a big dog. will probably forget why you were going to the store by the time Clearly situational accountability varies with the task, comyou get there; or when good friends fade and no longer answer munity, culture, heritage, orientation, etc. and the aforementhe phone? tioned examples are relatively simplistic compared to actual daily It doesn’t take a rocket scientist to understand how one’s be- life challenges. However, situational accountability establishes havior will change under such conditions regardless of neurologi- the skills and abilities a person is expected to bring to the table, cal impairment. People who lose jobs, retire when they are not the supports or assistance they may expect in the situation and ready to, lose loved ones, experience major environmental disas- the criteria for evaluating performance and continued memberters, or a whole host of other calamities will also demonstrate sig- ship in a given setting. When someone is “not appropriate,” nificant behavior change in the absence of a brain injury because we are saying that they are not following the expected rules or their lives and worlds have changed. This does not minimize properly using available resources within the setting. Problems the tremendous effects of a brain injury on behavior, but rather can clearly arise when a person’s judgment of their abilities and underscores the other collateral issues that are involved. expected rules differ from that of other members of the immediIn every case, regardless of the person and circumstances, ate community. their behavior changed when circumstances and events within and around them changed. Clearly, they “ain’t misbehaving” but Facilitation “simply” behaving differently, and in most situations behav- If you accept the relationship between changes in behavior as BRAIN INJURY PROFESSIONAL

9

a function of changes in variables that effect behavior, it then follows that “adverse” behavioral change is a warning sign that something is out of balance. A person is not “misbehaving” but “reasonably” behaving to a different set of salient factors.

Theoretically, by addressing the aberrant factor(s), the behavior of interest will also change. Practically, however, it is not always so easy. The contributing factors may not be readily identifiable, accessible or amendable for change. For example, we still can do woefully little to repair actual neurological impairment.

A person with poor self-awareness may insist that they are capable of driving when others disagree, not understand why comments they made in a social setting upset someone else, or not even realize that they made a disparaging comment. Pre-morbid issues that were not successfully addressed prior to the brain injury may remain prominent. There is likely to be disagreement and possible conflict among parties in such situations. Still, this approach will be effective more often than not, especially with newly developing challenges. It also helps to understand that the person in question is usually doing the best they can in such situations within the information and abilities that they possess.

At issue, however, is the concept of not fixing something unless it is broken. This is simply too costly and detrimental when considering behavioral challenges following brain injury. By the time behavioral challenges garner professional attention they are usually at a crisis level where the urgency of the immediate situation typically obscures the initial point of focus. As a result, we too often equate behavioral intervention with stopping or preventing dangerous or highly irritating behavior rather than facilitating personal competency that would have likely avoided the problem in the first place.

It is just as easy, if not easier to identify proactive skills and abilities that facilitate individual success and the factors that support such behaviors. Obviously if we can operationally define challenging behaviors and identify the salient factors that facilitate such behavior, we can also operationally define proactive behaviors and identify the salient factors that promote functional competence.

This type of approach offers multiple benefits to the person of focus as well as others in their world. Nothing breeds success like success and people who have plans, tools and supports to negotiate life’s daily challenges are less likely to “melt down” or disrupt the lives of others. There is greater likelihood for success, even in difficult situations, when relationships are built on support and respect rather than confrontation. Building honest and positive relationships is often cited the single most important approach to curbing “problem” behaviors. It is also easier and more economical to do things with the wind at your back than to fight on oncoming gale.

Consider the “typical” behavior plan that extensively identifies the aberrant behavior and the steps suggested to stop the problem behavior. Somewhere near the bottom of that plan there will be a brief statement to the effect of: “and socially reinforce the person when they act appropriately.” Unfortunately, little thought is given to what is socially reinforcing to the person or exactly what “appropriate” constitutes. When the plan’s focus is on stopping rather than supporting, we fail to articulate the structure and supports required for success. As a result many 10 BRAIN INJURY PROFESSIONAL

people quickly relapse into problem situations. Staff is just as vulnerable, especially when the focus of their training is on the “can’ts” and “shouldn’ts” rather than the possible. They become enforcement officials rather than coaches and mentors.

Now consider a behavior support plan that identifies a goal that the individual of focus and others have agreed to work on and the steps required for success. It articulately identifies what the person is independently capable of and where they need support. Perhaps the person has difficulties with initiation which can be overcome with a cue from another person, or visual perceptual challenges that require that tools be set up in a specific configuration to be properly recognized, etc. When problems develop, this approach seeks to first work out the problem towards the proactive goal, rather than blame the behavior or the individual. It also emphasizes the multiple salient factors that contribute to behavior and the means to use such factors to personal advantage.

In summary, the concept of “behavior” is not just relegated to “bad things” that people do, but represents the sum of everything that we do. People don’t “misbehave;” they behave in relation to a diversity of internal and external factors. In most cases of behavioral disruption, recognizing that the problem (salient factors out of balance) and not the behavior is the problem will help to stabilize challenges, once such factors are addressed. However, this alone does not constitute sufficient behavioral programming or support. Rather, we must also recognize the proactive goals and abilities of each individual and work to optimize these same salient factors for each person’s overall success and quality of life.

Ultimately, a variety of approaches and orientations may be required for any person or situation, but focus on ability and success first. An ounce of prevention is always worth more than a pound of cure, especially when served with heaping portions of personal respect.

About the Author

Harvey Jacobs earned his doctorate in psychology and behavior analysis from Florida State University, was a Post-Doctoral Fellow at the Johns Hopkins University School of Medicine, and a Mary Switzer Research Fellow. He has served on the faculty of the Johns Hopkins University School of Medicine, UCLA School of Medicine, and Temple University; as well as in on-staff, administrative roles, and as a consultant to numerous academic, medical, rehabilitation, community, assistive living and nursing home facilities in North America. Now in private practice, he is also a partner in Lash and Associates Publishing/Training and serves on a number of professional boards. His current interests include behavioral rehabilitation for neurological, psychiatric, medical and developmental disorders; brain injury; evaluating and treating “treatment refractory” cases; aging; outcomes research; vocational rehabilitation; family systems; staff training; and community integration. Throughout his career, he has worked across the age span. He also has a special interest in organizational and systems management as it relates to developing and operating comprehensive programming in both business and clinical settings. Dr. Jacobs has received millions of dollars in grants from federal, state and private foundations for his work and is the author of numerous books and articles. His new book, due in 2009 is titled DON’T “DON’T”: Understanding Almost Everybody’s Behavior After Brain Injury.

REFERENCES

The American Heritage® Dictionary of the English Language, Fourth Edition, Houghton Mifflin Company, Boston, Massachusetts, 2006.

A HISTORY OF SHARED SUCCESS For a free professional assessment and excellent treatment you can count on, call us.

• Fully accredited for Brain Injury, Spinal Cord Injury, Chronic Pain, and Stroke • Full spectrum of in- and outpatient services • Return of patient to highest level of function Call 504-897-8565 for a confidential professional consultation free of charge.

1401 Foucher Street • New Orleans, LA 70115 www.touro.com

Putting Lives In Motion Since 1984

BRAIN INJURY PROFESSIONAL

11

Neurobehavioural

Beginnings

The Kemsley Unit

By Peter Eames, Consultant Neuropsychiatrist (Retired) When we started the Kemsley Unit 30 years ago, we had no way of knowing whether our methods would work. We were certainly well acquainted with the theory and practice of clinical Behaviour Modification (BM), because by then we and our paramedical colleagues had a great deal of experience. We had long ago set up two special units for the management and treatment of disturbed adolescents (one for individuals of limited intelligence) so we had nursing staff, occupational therapists and Social Workers who had come to understand – and embrace – the necessary principles and practices. We had also begun to penetrate the complex world of avoidances and nullifications that inevitably surrounds any application of principles to human groups.

What we did not have was any solid evidence that BM could work with individuals who had suffered severe acquired brain injury (ABI). We had found only five references in the world literature that bore on the question. One was concerned with the very acute stage after ABI, one with effects on speech, and the others with only specific target behaviours. (Hollon, 1973; Legewie-Pertzborn et al., 1977; Dolan and Norton, 1977; Goldstein and Ruthven, 1983; Wall,1969.)

However, one of our strengths, I like to think, was that we never subscribed to ‘radical behaviourism’, in which the ‘system’ is considered to be a ‘black box’. We always believed that the mechanisms that underlie BM were brain-based. Of course it was this very fact that raised our concerns, because if the principal organ of conditioning was compromised by brain injury, it was quite possible that the necessary functions might also be compromised. (In this we were partly right, specifically in relation to the problems presented by individuals with ‘dissociative disorders’ (Eames, 1992). We were never proper Skinnerians: rather we were, I think, Thorndikeians. This was partly because Thorndike stated the principles of conditioned learning in humans so simply and straightforwardly, but partly because his 12 BRAIN INJURY PROFESSIONAL

research was founded on experiments with real life individuals – even if they were students! Nevertheless what we first set up was a ‘classical’ token economy, using actual tokens that were recorded at the same time as being handed over and had to be used to pay for privileges (Eames and Wood, 1985a). A very strict rule was that there should always be social reinforcement at the same time as the token was given: as it turned out, this was something that needed frequent reminders, because the process did tend to become mechanical. That is, staff would focus more on the distribution of tokens rather than the social reinforcement that the tokens were designed to evoke. This problem arose much more with the time-based tokens than with any individual-program ones that were more specifically based on performance.

From our work in the adolescent unit, we had already realised that, if ‘time out from positive reinforcement’ were to have any effect, it was essential to create an environment that was flooded with positive reinforcement of a general kind. In practice this meant ensuring that everybody working on the unit make a special effort to ensure that all interactions with the residents were positive and enjoyable, except in the specific circumstance of the ‘withdrawal’ of positive reinforcement in ‘time out’. Another ‘classical’ feature in the beginning was a standard Time Out Room (TOR), designed to be completely devoid of any interest.

The main reason for this was that it is very difficult to ignore behaviour on the unit when it entails someone trying to beat the hell out of you or another resident, hence the need for a place more suitable for this effect! Nevertheless an essential feature was that the person should be conveyed to the TOR without any attention – no comments, no eye-contact – so that there should be no risk of positive reinforcement. We had seen some examples where there was an observation window in the door of the room, but felt that this simply gave a focus of interest for the person placed in the room, so instead we used a reversed ‘peep-

hole’. (One resident who completely nullified the point of time out did so by masturbating whenever he was in the room!) The rule for use of the TOR was strict: only one minute was allowed, although it could be repeated until such time as the inappropriate behaviour disappeared; in practice, except in one notorious case, this was never more than a total of five minutes. (The exceptional case was, as you might have guessed, an example of dissociation – the result of self-administered carbon monoxide poisoning. This young lady chalked up something like half an hour in the TOR, the target behaviour being screaming. At that point we decided to give up; luckily (or perhaps predictably) that made no difference to the frequency of screaming! As a postscript, after transfer to another facility, she later died suddenly from a myocardial infarct: our relief that she had not done so whilst we were trying the effect of time out was enormous!).

Because we knew that we were going to be dealing with injured and therefore, in some respects at least, under-functioning brains, we assumed that it would be important, wherever possible, to improve brain functions by whatever means necessary.

In some cases this would entail using specific medications, but in others the need would be for re-training procedures, for example when trying to improve specific aspects of cognitive function.

As far as medications were concerned, although we gradually increased the range of treatments we used, we distinguished two main categories: drugs that attempt to replace a lost function, and those that attempt to control abnormal behaviours that interfere with everyday functioning. In the first category we used vasopressin to try to improve attention and thereby memory, with some success, until the only available version of lysine vasopressin, Syntopressin, was withdrawn by the makers because of low volume of use. We gradually acquired experience with Bromocriptine as a specific treatment for abulia and akinesia. We tried to use amphetamine for problems of apathy, but failed to have any success. In the second category there is no doubt that Carbamazepine can be essential when dealing with the Episodic Dyscontrol Syndrome (EDS), provided this is defined operationally (explosive outbursts of short duration, with sudden onset and offset, followed by some kind of remorse). We had already found this to be so in the adolescent ‘developmental’ group, but were able ultimately to show that EDS after acquired brain injury is particularly likely in individuals with evidence of pre-existing specific developmental anomalies such as dyslexia or clumsiness.

We also used antidepressant medications in cases where there was solid evidence of a depressive illness (which proved to be a minority) and antipsychotics (always of the ‘atypical’ groups) for clear-cut psychotic disorders. We attempted to use Specific Serotonin Reuptake Inhibitors (SSRIs) when there was marked obsessionality, but more often than not such traits proved to be the result of frontal lobe injury and the attempts failed.

Despite the many confounding factors, within quite a short time, we were able to confirm that BM could be effective in changing inappropriate social behaviours in those with ABI, so our confidence increased. This was then “sabotaged” by our finding that there were many individuals, principally those who had suffered hypoxic brain injury, who were not at all susceptible to the effects of reinforcement, indeed whose behaviours worsened when they were ‘reinforced’ by rewards that typically increase appropriate behaviours, or when they were ‘timed out’ - ignored – a procedure that should diminish unwanted behaviours. Indeed, of the first 24 subjects we analysed and published (Eames and

Wood, 1985b), six were in this category and had to be deemed failures of BM treatment.

In those early days there were three major aspects of the token economy that we later changed. First and foremost, once we had established a fairly stable team (not an easy business, since the Nursing Officers disliked the rowdiness of the unit and retaliated by moving staff members as soon as they had mastered the principles!), we decided that a ‘points’ system would be preferable, because it minimised the risks of cheating; we had also come to realise that social reinforcement was the most powerful tool of all. In fact, when we later set up another unit, Grafton Manor, which was independent and free-standing (Eames et al, 1989), we achieved much greater stability of the team, and in those circumstances we recorded points only for our own use, relying purely on the power of social reinforcement combined with time out from positive reinforcement. The second big change was that we originally ‘charged’ residents for meals: in the event that not enough tokens or points were available to ‘buy’ a meal, the resident was offered Complan, very nutritious but devoid of taste or interest (though the manufacturers would have us believe otherwise!). There came a time when there was special external scrutiny of BM programs and it was thought that this was probably something that would not be approved of, so we decided to discontinue the practice, although we always avoided giving meals in the immediate aftermath of inappropriate behaviours. The final big change was in relation to use of the time out room: for similar reasons (there was particular criticism of ‘seclusion’, which we did not believe was a reasonable interpretation of time out, but discretion being the better part of valour . . .) we stopped locking the door of the time out room, which to our surprise made no difference either to the residents or to the effectiveness of the procedure. (In one adolescent unit, the time out room was abandoned altogether, with what turned out to be disastrous results, such that within three months the unit was closed down because it proved impossible to contain really disruptive behaviour.)

The difficulties we encountered were mainly to do with the ability of the staff members to be vigilant about proper use of positive social reinforcement and to avoid any kinds of threats (for example, “If you don’t behave, I’ll send you to the time out room”). We thought it vital that reinforcement be a simple and straightforward consequence of behaviours, because otherwise powerful cognitive aspects would enter the equation. Another unexpected problem was the occasional resident who resisted the system in a cognitive manner – “I’ll be damned if I’ll let you see that you can change me!”. Difficult though this could be at times, we found that simple persistence paid off in the end. In the days of tokens, we found there was a thriving ‘black market’, including theft, blackmail and intimidation, but all that was solved by the adoption of the ‘points’ system.

At various times, we did use some punitive programs, always for specific inappropriate behaviours. For example, one resident had the habit of spitting very frequently – we recorded up to sixty events in one minute; we used alcoholic ammonia insufflation, which proved so effective that even a year later, when many other inappropriate behaviours had reappeared, he still desisted from spitting. Another resident had acquired the habit of anal manipulation and forced Valsalva manoeuvre during a long semi-coma, to the extent of producing an enormous anal prolapse as well as a great deal of faecal smearing: we employed modBRAIN INJURY PROFESSIONAL

13

erate electric shock responses (with the resident’s agreement and approval!); the result was again unexpected, in that he ‘fought against’ the conditioning and would even increase the behaviours during a session (we referred to this as ‘cognitive override’), but after he left the unit the behaviour disappeared altogether, never to return. We also used the method of ‘Massed Practice’, for ‘punitive incontinence’, but also with one female resident who persistently talked about various themes (“I am going to write a book about my injury, to help other people”, “My husband has left me and gone off with a wonderful bitch”, and many others) it involved a marathon program, twelve hours a day for a week, but it did pay off in the end.

One particular and possibly contentious aspect that seemed to me especially important concerned some legitimate antipathies that some of the team developed for particular residents.

It was clearly not possible, within the ethos we were trying to develop, to allow these to be openly expressed. However, within the context of team meetings I felt it was important to give team members ‘permission’ to express their frustrations and even anger in an open way. I believe that in practice this prevented some very undesirable staff behaviours.

During the later development of the Kemsley Unit, a much wider range of BM procedures was explored, principally by Nick Alderman, by then the senior neuropsychologist. I was impressed by his inventiveness, but have never been sure whether the additional measures were consistently as effective as the simple application of positive social reinforcement and time out from positive reinforcement.

For the first two years of the Kemsley Unit we thought we were probably unique. I then met Scott Boruff at the San Jose conference and learnt about Tangram, which sounded so fascinating that I had to visit. I was surprised to find that not only meals had to be paid for in Tangram Dollars, but even toilet paper – something that had never occurred to us. However, I felt the strongest point about Tangram was its situation miles from anywhere (nearest neighbours 11 miles away, as I recall). It was clear that a proper form of BM was practised there, so some years later when I was invited by Bob Hogan, Scott’s lieutenant at Tangram, to join the new team at Highwatch as consultant, I jumped at the chance. It was impressive that so many of the team there were eager to learn, so that apart from the well-grounded principles of BM, I was able to introduce some of the methods of recording and graphing behaviour. (It was Tony Bedford, one of the psychologists at St Andrew’s Hospital most involved in the development of BM units, who used to say “If you’re not measuring, you’re not doing behaviour modification”.) The most general change after Highwatch was the attempt to use the same methods within a much shorter time-frame and this was done in a variety of places in the US. However, as far as I could judge, the results were not as lasting or stable as in the more formal units. Attempts were made also to use the BM technology in outpatient settings, but inevitably it proved difficult to overcome the ‘stray’ reinforcement given unwittingly by family members.

One of the most enduring rules of BM units is that it is essential to avoid any kind of psychotherapy or explanation-based management of behaviour disorders in the immediate aftermath of the behaviour (contingent period). Some units failed to respect this need and suffered as a result. Giving explanations or ‘sympathy’ in the wake of inappropriate behaviours can serve only as positive reinforcement, although it is possible to engage 14 BRAIN INJURY PROFESSIONAL

in that sort of interaction after a reasonable interval following the disordered behaviour, for example in pre-planned ‘mentoring’ sessions. As I have already pointed out, it is essential to maintain a very human and congenial atmosphere in such a unit and to ensure that the staff people are constantly reminded of the need for good personal relationships with the residents, founded in respect and dignity. There is, however, a sense in which such regimes have to be ‘imposed’, because otherwise they cannot really work properly. Our practice always was to explain the needs and demands of the regime at great length and to secure each resident’s and family’s agreement and consent to the ‘rules’ and procedures. Whether this was enough to achieve the approval of the ‘politically correct’ is another matter.

As far as I know, there have been no really new initiatives or methods of BM in recent years. That may be simply because the basic nature of this form of treatment has long been established.

Today more attention may now be being paid to the fostering of appropriate behaviours and the development of additional skills.

However, in the Kemsley Unit we had always incorporated social skills and cognitive training programs, as well as the systematic positive reinforcement of competing appropriate social behaviours. It is likely that our ability to help reduce highly challenging behaviours drew more outside attention than this other equally important aspect of our program. For me, this is a very powerful technology that will always work in the interests of residents, provided it is applied carefully, respectfully and correctly.

References

Dolan MP Norton C. A programmed technique that uses reinforcement to facilitate acquisition and retention in brain-damaged patients. J Clin Psychol 33 (2): 496-501, 1977.

Eames P. Hysteria following brain injury. J Neurol Neurosurg Psychiatry 55: 1046-1053, 1992.

Eames P Turnbull J Goodman-Smith A. Service delivery and assessment of programs. In: Assessment of the Behavioral Consequences of Head Trauma. Lezak M. New York: Alan R Liss Inc. Pages 195-214, 1989.

Eames P Wood RL. Rehabilitation after severe brain injury: a special unit approach. Int. Rehabil.

Med. 7: 130-133, 1985a.

Eames P Wood RL. Rehabilitation after severe brain injury: a follow-up study of a behaviour modification approach. J Neurol Neurosurg Psychiatry 48: 613-619, 1985b.

Goldstein G Ruthven L. Rehabilitation of the Brain-Damaged Adult. New York: Plenum Press, 1983.

Hollon TH. Behaviour modification in a community hospital rehabilitation unit. Arch Phys Med Rehabil, 54: 65-68, 1973.

Legewie-Perztborn H Legewie H Foit J Brinkman R. Verhaltenstherapeutische Rehabilitation nach Schadelhirntrauma. Psychiat Praxis 4: 223-231, 1977.

Wall RT. Behaviour modification and rehabilitation. Rehabilitation Counselling Bulletin 173-183, Dec 1969.

About the Author

Peter Eames studied medicine at Corpus Christi College, Cambridge and the London Hospital. He trained in neurology and psychiatry in the Royal Air Force, where there were in fact only three neurologists and eleven psychodynamic psychiatrists. He became addicted to neuropsychiatry and developed a particular passion for acquired brain injury and its rehabilitation. After some years in Bermuda as “the organic psychiatrist” in a team of four, he moved to St Andrew’s Hospital in Northampton, where he was involved in the development of the first rehabilitation unit for people with severe brain injuries and equally severe behaviour disorders (the Kemsley Unit). After eight years he developed similar units for the company “Brain Injury Services,” for 15 years at Grafton Manor and for three years at Beechwood House in Gwent.

In addition, for 20 years he worked in acute head injury, both on the wards and in the follow-up clinic. In the 1990’s he had the privilege of helping Dr Nacho Quemada establish the first brain injury rehabilitation unit in Spain at the Hospital Aita Menni in Mondragon, Guipuzcoa. Understandably his main interests have been in the field of behaviour disorders following severe brain injury; one special interest has been the observation and definition of syndromes involving dissociation (‘hysteria’) in this context.

BRAIN INJURY PROFESSIONAL

15

Neurobehavioral Crisis Hospitalization: On the Need to Provide Specialized Hospital Brain Injury Crisis Programming

Rehabilitation Facilities. Nevertheless, when it comes to crisis hospitalization, individuals with ABI are most often left in the care of professionals and programs that typically lack sufficient knowledge about brain injury. While staff on mental health crisis stabilization units are well qualified to meet the needs of most admissions, unfortunately, customary treatment practices and medication protocols are frequently ineffective for people with ABI who are demonstrating behavioral decompensation.

The relatively small proportion of such cases seen on these units precludes adequate staff training or preparation.

CONSIDERATIONS FOR BRAIN INJURY CRISIS HOSPITALIZATION

Five key variables contribute to the challenges that individuals with ABI present to traditional mental health crisis hospital units: (1) the need to consider cognitive deficits and strengths in both the etiology of behavioral dyscontrol and in psychotherapeutic endeavors, (2) the unique adjustment challenges following brain injury, (3) the response of individuals with ABI to psychotropic medications, (4) the need for supradisciplinary teams (Karol, 1991) to treat brain injury, and (5) the need for specialized discharge arrangements.

by Robert L. Karol, PhD, ABPP and Robert Sevenich, M.D., J.D.

INTRODUCTION

Most behavioral challenges following acquired brain injury (ABI) can be successfully addressed by professionals in the community. Combinations of psychologists, psychiatrists, behavioral analysts, residential provider staff, and other therapists are typically adequate to address emotional discord, and hospitalization can be avoided. However, there are instances following brain injury when individuals are at sufficient risk for harm to themselves or other people and hospitalization is required.

Properly designed in-hospital programs can provide safety for all parties, provide a safe environment to adjust medications and behavioral treatment plans, and allow for emotional stabilization. Nevertheless, in most circumstances, crisis hospitalization occurs on traditional mental health units where there is a lack of appropriate brain injury expertise.

The lack of specialized crisis hospitalization programs for individuals with ABI is in contrast to other programs for brain injury care. There are brain injury programs for acute rehabilitation, residential treatment, vocational programming, etc., many of which are accredited by the Commission on Accreditation of 16 BRAIN INJURY PROFESSIONAL

Cognition and Behavior Cognitive dysfunction is the hallmark of brain injury and is an essential feature in diagnosing brain injury. Other than brief screenings of limited value, mental health crisis units do not routinely conduct neuropsychological evaluations on all individuals with ABI. The lack of such data can undermine treatment since behavioral dyscontrol leading to hospitalization often has its roots in cognitive dysfunction. While a full discourse on the links between cognition and behavior is beyond this article, key examples may be informative: (1) Disorientation, sometimes accompanied by confabulation, can cause irritability when questions by other people are annoying, leading to resistance. Disorientation impairs the sense of self–efficacy. (2) Poor attention and concentration can facilitate misunderstanding when crucial information is missed, resulting in people believing that their questions have been ignored and possibly causing infuriation. Social inappropriateness also may ensue when individuals with ABI do not attend to social cues. (3) Executive difficulties (e.g., poor tracking) produce errors accompanied by frustration and lashing out at others or guilt and self destructiveness. Executive problems can lead to poor insight, ranging from psychological denial to anosognosia (unawareness), as well as anxiety. Arguments may arise when there is a disagreement between individuals with ABI and other people about perceived abilities. Impulsivity, evidenced by elopement, social/sexual inappropriateness, suicidal behavior, aggression, etc., on one hand, or passivity, on the other hand, may stem from executive dysfunction. (4) Memory and learning deficits can result in poor recall of critical information making other people’s decisions seem capricious, even when the person with ABI was involved in the decision making process. Individuals with ABI may forget agreements, learned insights, their own behavior, and consequences. This impoverished data base can make the behavior of other people toward them seem unfair.

Resentfulness can increase, as can paranoia. (5) Verbal reasoning and communication deficits can result in misunderstood

discussions. In addition, other people may reject the views of individuals with ABI because their conceptualizations are too concrete or simplistic, which can cause further frustration. Language problems hamper communication, isolating individuals with ABI and causing depression. (6) Nonverbal processing problems may cause individuals with ABI to be inattentive to contextual cues in social situations and when communicating.

Behavior may appear as unprovoked since other people fail to realize the nonverbal signals that individuals with ABI are misreading. (7) Visuospatial/visuopractic dysfunction may limit social and recreational participation with subsequent isolation, depression, and lowered self esteem.

Cognition and Counseling Not all individuals will benefit from traditional counseling and psychotherapy adaptations may be required due to cognitive and communicative challenges. Critical issues to consider include: (1) time of day when counseling occurs, session duration, and fatigue after other activities, (2) word choice, speed, and duration when speaking, (3) use of analogies, logic chains, and complex conceptualizations, (4) processing speed of individuals with ABI and the number of topics covered per session, (5) helpfulness or distraction of diagrams, drawings, and gestures to communicate concepts, (6) need for repeated summarization during sessions, (7) use of memory supplements such as providing notes, pausing for the individuals with ABI to write notes, tape recording, etc., (8) ability to remember and independently complete homework, and (9) expectation for slower change.

Treatment Challenges Traditional treatment methods of skill building and contingencies may also prove challenging to implement (Karol, 2006), especially under crisis conditions. Skill building works by teaching new skills to replace old behaviors that are less effective. However, some individuals with ABI struggle to learn needed skills, perseverate on old skills, forget to do new skills, or distort skills to the point of ineffectiveness. Although errorless learning procedures (Martelli, Zasler, and Tierman, 2005) may work, they may be unfamiliar in many traditional mental health crisis settings. Consequences can effect behavior, but memory impairments can break the chain between behavior and consequences.

Moreover, poorly designed behavioral programs often ignore important antecedent conditions that cue behavior. Additionally, many behaviors after brain injury are not willfully determined but reflect impulsivity, inability to cope with overstimulation, difficulty with organic emotional dysregulation, etc. The lack of response by some individuals with ABI to skill building and contingency management approaches may confound traditional mental health professionals.

Few traditional crisis programs use a “neuropsychosocial” approach (Karol, 2003) to treat behavioral dyscontrol after brain injury. This approach creates a unique environment, different for each individual with brain injury. The environmental variables include the physical plant and, most crucially, staff behavior. How staff acts significantly affects the behavior of individuals with ABI (Yoda, 2000); therefore, staff must act differently with each person based on each individual’s neuropsychological functioning, psychosocial history and other salient factors. Behavior plans need to describe the professionals’ expected behavior (e.g., “The

staff will…”), not the expected behavior of individuals with ABI (e.g., “The individual will hit less than once per day….”). When treatment plans do not work, it is because staff insufficiently understood the individual and were therefore unable to act appropriately. This approach requires staff to be very emotionally secure and to understand multi-factorial effects of brain injury.

Adjustment Issues Professionals must also be ready to address at least three unique therapeutic issues when treating individuals with ABI. First, there is a “catastrophic condition” (Goldstein, 1952). When there is a failure to perform as expected (based on pre-onset historical performance on tasks or current personal expectations for themselves on novel tasks) and impaired abstract conceptual ability to understand why (i.e., failure to factor in the brain injury), a lack of self-actualization occurs. This catastrophic condition can lead to being overwhelmed (shame, anxiety, hopelessness, frustration), passivity (withdrawal, flat affect), aggression (hostility, resentment, acting out through substance abuse), or temporary masking of concerns (hiding anxiety, superficial acquiescence, concealment). In brief, the loss of integrity of the “self ” can demonstrate itself in numerous behavioral symptoms.

Second, is the manifestation of grief which is different from depression (Niemeier, et al., 2004). Professionals usually try to apply stage theories to grief after brain injury. Yet, such models are typically derived for single events with finite resolution, such as death. Brain injury (and its sequela), in contrast, is an ongoing condition with constantly evolving challenges as life post onset proceeds. This is poorly understood by individuals with ABI, their families, and their support system. Professionals must appreciate the uncertainty and even learned helplessness that can ensue.

Third, is anosognosia. Many people may have psychological denial (in its simplest conceptualization, suppression of information regarding their personal characteristics or behavior about which they know the truth, but find too painful to openly incorporate into their self concept). However, only individuals with ABI may have anosognosia (again in simple terms, unawareness of the truth because of the impaired brain’s ability to accurately perceive its abilities). Professionals who are unfamiliar with the devastating behavioral fallout of anosognosia or who confuse it with psychological denial are working at a critical, perhaps unrecoverable, disadvantage with individuals with ABI. These three topics (catastrophic reaction, grief, and anosognosia) could each lend themselves to a book-length discourse. The point is that professionals who are uninformed about the unique coping challenges after brain injury are likely to fail as therapists.

Medication Management An important component of any crisis program is medication management. However, medication management during crisis hospitalization for individuals with ABI offers unique challenges. While psychotropic medications can positively impact the mood, behavior, and cognition of individuals with ABI, there are unfortunately few resources or studies available to guide clinicians (Busch and Alpern, 1998). Treatment protocols and decision trees are available for standard psychiatric diagnosis, but they do not necessarily guide successful treatment options for people with ABI. Moreover, unlike many psychiatric conditions BRAIN INJURY PROFESSIONAL

17

Real Life deserves Real Outcomes Learning Services programs are designed to provide specialized support for adults with brain injuries in a real-life setting. All of our programs are equipped and staffed to maximize each resident’s quality of life as they take on the challenges of a brain injury. Our approach supports outcomes by offering individuals the tools necessary to live life on their own terms.

•

Neurobehavioral Rehabilitation

•

Residential Rehabilitation

•

Supported Living

•

Therapeutic Day Activities

To learn more about our programs nationwide, call 888.419.9955, or visit learningservices.com.

18 BRAIN INJURY PROFESSIONAL

S i c kK i ds Ce ntr e f o r Br a i n & Be h a vi o u r

1st Annual Symposium:

Brain Injury in

Children

July 8th - 10th, 2009 Four Seasons Hotel • Toronto, Ontario, Canada www.sickkids.ca/learninginstitute li.conferences@sickkids.ca

Centre for Brain & Behaviour ACCREDITATION: This event is an Accredited Group Learning Activity (Section 1) as defined by the Maintenance of Certification program of The Royal College of Physicians and Surgeons of Canada, approved by the University of Toronto (18 credits). The Office of Continuing Education and Professional Development, Faculty of Medicine, University of Toronto, designates this educational activity for a maximum of 18 Category 1 credits toward The American Medical Association Physician's Recognition Award. Each physician should claim only those credits that s/he actually spent in the activity. As a result of a reciprocal agreement between the EACCME and the AMA, European registrants may claim AMA PRA Category 1 (18 credits) as equivalent.

THE NEW YORK ACADEMY OF TRAUMATIC BRAIN INJURY A Multidisciplinary Educational Alliance Traumatic Brain Injury: The Treatment Imperative Thursday March 26 - Saturday March 28, 2009 NYU Hospital for Joint Diseases 301 East 17th Street at 2nd Avenue, New York, NY 10003 Conference Description • Opportunities to improve your assessment and management skills with Nationally recognized TBI experts offer evidence-based information TBI patients and their families. on new strategies in the management of Traumatic Brain Injury • 10 plenary sessions each addressing a separate management issue in (TBI) during our 12th annual multidisciplinary Brain Injury conferTBI patients ence. New technologies and treatment options need to be examined • Network with a nationally-known expert TBI faculty. to optimize health outcomes for patients who have sustained a TBI. Join us in New York City at our 12th annual multidisciplinary Brain Injuries conference where you can take home practical tools and techniques to update your practice and expand your support network with experts in TBI.

This program will expand the scope of your professional practice and provide new resources with practical applications. Re-energize yourself to make a difference in the lives of TBI patients and their families.

Highlights of the 2009 Program: • Two Preconference sessions examining key issues: “Cognitive Remediation in Traumatic Brain Injury” and “Visual Rehabilitation In the TBI patient”

Sponsored by: Rusk Institute at 17th Street Brain Injury Program The Michigan Neuropsychological Society

For more information/registration, visit: www.nyatbi.net

where symptom remission (elimination) is the primary treatment goal, treatment goals for individuals with ABI generally involve symptom control or management. Even modest improvements in function can have a tremendous impact on quality of life and functioning.

Many factors common among individuals with ABI can represent hurdles to medication management. They often have limited insight into their deficits or difficulties, and frequently they are poor historians (Giacino and Cicerone, 1998). Development of rapport may be difficult and they may even decline, or attempt to sabotage treatment. Extensive and repetitive education to individuals with ABI and their families may be required to improve compliance and to help monitor possible side effects. Underlying co-morbid medical and pain issues may complicate treatment.

Medication needs may change during the various phases of recovery as medications that are useful at one phase of recovery may be counter therapeutic at another. Clinicians should continually reassess whether a particular medication remains beneficial and must be vigilant to behavioral difficulties that may be a byproduct of a medication. Still, despite these obstacles, effective medication management can be achieved.

Response to medications may not parallel the general psychiatric population for multiple reasons. Although target symptoms in individuals with ABI may appear similar to more common psychiatric conditions, the symptoms may represent a completely different neurobiological process. Understanding how a healthy brain functions is beyond our current understanding; we have even less knowledge of how an injured brain works. Thus, the psychopathology of injured brains may represent completely different processes that require completely different pharmacologic approaches. Moreover, treatment responses vary greatly and response to psychopharmacological treatment is generally less robust than in the general psychiatric population. Furthermore, individuals with ABI may be more sensitive to potential medication side effects or may respond paradoxically (Arciniegas, et al., 2000). In general, (1) medication dosages may be initially instituted at a lower dosage and with a slower titration, and (2) the delayed onset of the medications’ effects requires patience that can prove difficult within the time restraints of acute crisis hospitalization.

Medication decisions must be organized and systematically based upon accurate data. This typically requires collateral information from caregivers and family that addresses frequency, intensity, and quality of the target symptoms influencing quality of life. Objective data collection exploring behavioral patterns and antecedents helps define target symptoms and suggests pharmacologic approaches, complimenting a broader overall neuropsychosocial treatment plan. A well thought out and organized supradisciplinary team approach is essential in improving the chances of successful pharmacological treatment.

Team Design To provide successful behavioral or pharmacological treatment professionals must be organized in supradisciplinary teams within an integrated model of care. Traditional health care was originally organized as multidisciplinary teams in which each function of the person being served was treated by a discipline specific professional. The person was divided up by discipline (e.g., the physical therapist took the legs, the occupational thera20 BRAIN INJURY PROFESSIONAL

pist took the arms, the psychologist took the limbic system and the frontal lobes, etc.). Advancement occurred with the introduction of interdisciplinary teams in which professionals recognized that there was overlap between disciplines. Although the person was still divided up by disciplines, there was overlap (e.g., both speech pathology and neuropsychology took cognition).

Still, this results in an artificial division of labor (as well as turf battles among professionals). Instead, teams should be organized by problem areas/hurdles to successful outcome (e.g., behavioral crisis management) with every problem being the purview of every discipline (e.g.,supradisciplinary).

Discharge Planning Many individuals with ABI with severe behavioral dyscontrol require special help after hospital discharge. This can be particularly vexing for professionals who do not know their local brain injury resources. Yet, community support services for brain injury are an essential component of integrated care. These specialized ABI services should include residential services (e.g., in-home ILS support, apartment living sites, group homes, transitional living services), emotional and behavioral support (e.g., peer counselors, support groups, psychologists, neuropsychologists, psychiatrists, family/marital counselors, child rearing training, chemical health support), vocational services (e.g., job acquisition support, club houses, transitional work programs, state vocational agencies, vocational skills assessment, career interest assistance), educational opportunities (i.e., school completion and advanced education support), recreational outlets (i.e., physically and cognitively accessible community activities), transportation (i.e., a convenient, reliable, inexpensive system), etc. Behavioral relapse is assured without such community support. Hence, contact with ABI community resources is crucial for staff on traditional units.

CONCLUSIONS AND RECOMMENDATIONS

In light of the challenges that brain injury presents to traditional mental health crisis hospitalization programs, individuals with ABI ought not to have to receive care in such generic programs.

Rather, care should occur in dedicated brain injury neurobehavioral crisis programs staffed by experts in brain injury and behavioral management working in a supradisciplinary fashion. Such programs are quite feasible and, for example, ours in Minnesota can serve as a model.

In the interim, before the hopeful national availability of these programs nationwide, professionals working on traditional units need to begin to incorporate brain injury experts into their staff.

Psychiatrists, neuropsychologists, rehabilitation psychologists, behavior analysts, nurses, etc. who have expertise in brain injury can greatly improve the quality of services these units provide. Educational opportunities (e.g., conferences, journals) can be pursued to start to upgrade the awareness, knowledge, and skill level of all staff.

In those locations where it is not possible to at least begin the preceding process, consultation with community based experts might be a feasible step. Community resources may be likely to provide guidance. For example, state Brain Injury Associations can be valuable sources of community linkages and guidance. At a minimum this can increase awareness of discharge sites and community based programs that can help avoid re-hospitalization.

REFERENCES

Arciniegas D. B. Topkoff J. Silver J.M., Neuropsychiatric aspects of traumatic brain injury. Current Treatment Options in Neurology, 2:169-186, 2000.

Busch C.R. Alpern H.P., Depression after mild traumatic brain injury: A review of current research. Neuropsychology Review. 8: 95-108, 1998.

Giacino J.T. Cicerone K.D., Varieties of deficit unawareness after brain injury. Journal of Head Trauma Rehabilitation.13:1-15, 1998.

Goldstein K., The effect of brain damage on the personality. Psychiatry. 15: 245-260.1952.

Martelli M.F. Zasler N.D. Tiernan P.R., Skill acquisition and automatic process development after brain injury: A holistic habit retraining (HHR) model for community reentry. Brain Injury Professional. 2: 10-16. 2005.

Karol, R.L., Dealing with mental health issues after brain injury: A user’s guide to approaches real and imagined. Mental Health Issues of Adults with Brain Injury Conference, Minneapolis, MN. September: 1991.

Karol, RL: Neuropsychosocial intervention: The practical treatment of severe behavioral dyscontrol after acquired brain injury. New York: CRC Press LLC, 2003.

Karol, RL: Principles of behavioral analysis and modification.

In: Brain injury medicine. N Zasler, DI Katz, & RD Zafonte (Eds.) Demos Medical Publishing, Inc., New York, NY. Pages 815-833, 2006.

Niemeier J.P. Kennedy R.E. McKinley W.O., et al., The Loss Inventory: A measure of emotional and cognitive responses to disability. Disability and Rehabilitation. 26: 614-623, 2004.

Yoda B.B. Schaub C. Conway J., et. al., Applied behavior management and acquired brain injury: Approaches and assessment.

Journal of Head Trauma Rehabilitation. 15: 1041-1060, 2000.

About the Authors

Dr. Robert Karol is the Director of Psychology/

HomeLife, Inc.

Neuropsychology and Brain Injury Services at Bethesda Hospital in St. Paul, Minnesota. His programs include both a dedicated brain injury Neurobehavioral Crisis and Assessment (NCA) Program for short term stabilization and a Neurobehavioral Brain Injury (NBI) program for longer term treatment for severe behavioral dyscontrol, as well as an acute Brain Injury Rehabilitation (BIR) program, all supported by brain injury clinics for individuals in the community.

He also hosts an annual conference: “Managing Challenging Situations in Brain Injury Care.”

He is author of the book Neuropsychosocial Intervention: The Treatment of Severe Behavioral Dyscontrol after Acquired Brain Injury and a book chapter “Principles of Behavioral Analysis and Modification” in Brain Injury Medicine. He is currently at work on a book, accompanied by a therapist’s guide, on grief and loss after brain injury.

Dr. Robert Sevenich is a board certified psychiatrist practicing in St. Paul, Minnesota. He is Medical Director for Behavioral Health for HealthEast, a four hospital and multiple clinic/ community care delivery system in St. Paul, Minnesota. He is the Medical Director of Brain Injury Services at Bethesda Hospital within the HealthEast system, a regional leader in the treatment of ABI providing diagnosis and treatment for both hospitalized individuals and individuals living in the community. Dr. Sevenich is also an attorney, licensed to practice law in Minnesota.

He has a forensic psychiatric practice specializing in personal injury and medical malpractice.

a place TO CALL

HOME Dedicated long term care in a client friendly home setting, for individuals coping with the lingering effects of brain injury.

HomeLife, a place of specialized residential care for ongoing rehabilitation.

www.talkhome.net Rebuilding lives, restoring joy.

Located in Kalamazoo, Michigan 

c

1-888-825-5466



 

 



 

 

   

 



BRAIN INJURY PROFESSIONAL

21

Managing More than Medications

by David E. Ross, M.D., and Lisa Endy Clevinger, M.S.W., L.C.S.W.

Introduction Patients with brain injury often require a variety of treatment modalities that can be uniquely challenging. Multiple problems including include cognitive and mood dysfunction, and practical problems involving inadequate finances or transportation can make it difficult for them to independently manage their medications. Hence, physicians or other prescribing clinicians need to change traditional models for medication management.

While this paper focuses on treating patients with mild to moderate brain injury in an outpatient setting, the ideas are applicable to individuals with greater challenges.

Traditional model for managing medications Traditionally, a patient sees the physician and reports the symptoms. The physician prescribes a medication and explains the potential benefits and risks. The patient takes the medication as prescribed and follows up to let the doctor know what happened.

Problems with the traditional model for managing medications Problems can occur anywhere along the chain of events for patients with brain injury. First, the patient may not be aware of 22 BRAIN INJURY PROFESSIONAL

having a problem or what the nature of the problem is. They may need help to defining the problem so that the right solution can be found.

Due to a general lack of knowledge regarding brain injury, untrained physicians may be unaware of the nature or extent of a patient’s injuries, and the need for appropriate follow-up.

This can be more common with mild injuries than with severe injuries where impairments are more obvious. For example, a patient may be seen in the ER after a mild injury and told to follow-up only if needed. The patient goes home and over the next few weeks has persistent problems, but is unaware of the importance of these problems and the need for further care.

Or, a patient may be discharged with outpatient neurosurgery follow-up. After a month with no surgical complications the patient is discharged from care without further follow-up.

However, the patient does poorly at home and at work, and months or years pass before he finally finds his way back into the health care system.

Once a patient finds the right health care practitioners, poor memory and organization can lead to forgetting appointments or arriving late. Many clinicians have no-show policies and will

discharge a patient after too many no-shows.

Patients can also have transportation problems. Cognitive, visuospatial, musculoskeletal and other problems can interfere with driving. Friends or family members can sometimes drive, but this is burdensome and intensifies the patient’s grief. Buses or taxis can be used, but are expensive and require greater organizational skills.

At the physician’s office, problems with poor concentration, inattention, poor memory or poor auditory processing may make it difficult for a patient to understand directions. The patient may fail to ask the physician to clarify instructions due to lack of insight, poor executive function or apathy.

The patient might not take the medication as prescribed.

A classic, ironic example is when a patient with memory problems forgets to take his memory medication. If the patient has adverse effects, he might not be aware that the medication is causing them and therefore might not contact the physician to discuss the problem.

Loss of income and health insurance due to unemployment can further exacerbate a person’s challenges in obtaining necessary health care.

Solutions for managing medications First, it is important for any physician who serves any patients with brain injury to be able to understand even its subtle or mild effects and to be able to recommend appropriate followup to other services and clinicians. Family members also need training in order to be sensitive to changes in the patient and to know when to seek assistance.

Having people who can help support the patient and enhance the lines of communication between the patient and physician can also help. Caregivers (typically a family member or close friend) and/or a case manager can often help this process.

Situations vary. Some patients do not need a caregiver or case manager. Others need only a caregiver, or only a case manager. Some need both but have access to neither.

An appropriately involved friend or family member can provide interpersonal communication, love and emotional support, as well as advocate for the patient. They may accompany the patient to appointments and help the patient explain and understand crucial issues such as: the patient’s symptoms and response to medications, treatment options, understanding recommended medication changes, implementing the changes at home, and observing treatment effects.

In complex cases or when a caregiver is not available, case managers can perform these functions at a higher professional level. “Case manager” has been defined in various ways. In this context, we are referring to a clinician who is trained at the bachelor’s or master’s level, often a social worker or nurse.

Many of the case manager’s duties overlap with those of caregivers. However, often there are complexities of the health care system or clinical situation which are challenging even for skilled nonclinical caregivers. In these cases, it is very helpful to have the assistance of an experienced case manager. For example, a case manager may have the knowledge of a wide variety of community resources and may understand how to deal with bureaucracies such as government organizations or insurance companies. As one of many examples, Medicaid will pay for

patients’ transportation to physician visits, but Medicare and private insurance companies usually will not. Case managers also can serve as a buffer in critical issues or in coordinating communication and care between the many different professionals involved in the patient’s care.

In order to enhance communication and optimize care, a patient will usually have contact with the case manager more frequently than with the physician. In our outpatient setting the majority of our patients with mild to moderate brain injuries benefit from having both a caregiver and a case manager.

Other approaches can also be helpful when managing medications in patients with brain injury. Note pads, calendars, tape recorders, PDA’s, cell phones and computers can be used to assist memory and organization. Each of these has advantages and disadvantages. The paper-based systems are simpler to learn and operate. The electronic devices are more powerful and versatile. Patient preferences and needs vary widely. For example, one of our patients said she tried “all the fancy electronic gadgets” and eventually settled on a simple notebook and calendar in a small leather bound case, which she carried “everywhere” with her. In another example, a patient who worked at an airport and was frequently on the move preferred to get reminders as text messages via her cell phone. Whatever system of devices is used, it should have at least two functional components: 1) a journal, for writing down things that are cognitively or emotionally important; and 2) a calendar. The system must be convenient and portable to match the patient’s needs or it will not be used.

Seeing patients more frequently is also helpful. For example, suppose that a physician wanted to start a patient on methylphenidate (Ritalin) at 10 mg each morning and titrate up by 10 mg per day per day to a maximum of 20 mg each morning and at noon. For a cognitively intact patient, the physician could give these instructions and have the patient return in a month, feeling confident that the patient would follow the instructions or call the physician if there were a problem. However, for a cognitively impaired patient, the physician might want to have the patient return in one week, in order to make sure that the patient understood the instructions, was taking the medication as prescribed, and to check for possible adverse effects.

Although face-to-face physician visits are ideal, telephone appointments can also be helpful. This may be especially true when managing psychiatric medications vs. other medications for which the physical examination is more important. For example, it is necessary for patients on antihypertensive medication to come into the office to have their blood pressure taken.

However, much of the information involved in evaluating functional cognition or mood is based on subjective report or observation by the patient or caregiver. This information can often be effectively communicated via phone.

Three-way calling is an inexpensive and powerful way to bring the patient, caregiver and clinicians together when all parties cannot come to the office. Telephone appointments can also overcome transportation difficulties, which can be a major obstacle to receiving treatment. However, telephone appointments do not allow for physical examination and over the phone mental status examination is limited. For example, paraverbal expression (body language) cannot be assessed via phone. It is BRAIN INJURY PROFESSIONAL

23

more difficult to establish rapport and a friendly relationship over the telephone vs. in person. Medical insurance will also usually not pay for the visit. A reasonable approach is to use face-to-face visits initially and as the primary type of visit, and to supplement these occasionally with telephone visits according to the clinical situation.

A pillbox is a useful and inexpensive device for organizing medications. They range in complexity from simple, with 7 slots (one for each day the week) to more complex, with 28 slots (7 days x 4 administration times per day). In addition to helping a patient organize and remember to take her medications, pillboxes and pill bottles can be brought into the office and checked for understanding and compliance.

Expanding prescription directions can also improve medication compliance (See Figure). The brief directions included with most medications can be difficult for patients with brain injury to read, understand, or implement. Providing expanded instructions specific to the patient’s situation can be of immeasurable benefit. These instructions can expand upon the briefer directions printed on the bottle label, and include other important recommendations. This simple approach takes very little time, helps the patient remember what to do and can enhance communication with others.

Another useful principle is to test the patient’s understanding of directions in the office. For example, the physician can have the patient read the recommendations and explain what they mean.

Although they are not financial advisers, the physician or case manager may have ideas to help a patient with financial burdens. For example, a patient may not have insurance and may have a difficult time finding a primary care provider Figure Traditional model: In this example, the physician gives the patient verbal instructions and a couple written prescriptions.

The pharmacy prints the above directions on the bottle labels.

Zolpidem (Ambien) 10 mg Directions: Take 1/2 pill each night for 2 days, then take 1 pill each night.

Escitalopram (Lexapro) 10 mg Directions: Take 1/2 pill each day for 7 days, then increase to 1 pill each day.

Prescription Directions Enhanced model: The patient is given a take-home sheet, handwritten by the physician, which contains additional information and explanation.

• Pick up your new prescriptions for Ambien and Lexapro today at Green’s Pharmacy (we have already sent the order in to your pharmacist).

• Take blood work form to Key Labratories at 312 Main Street on Monday at 9am to have your blood drawn. If there are problems call 555-1234.

• Call Dr. James, physiatrist on Tuesday at 555-9876 to set up an appointment to discuss the pain in your left leg.

• Start new medications, as follows: • Day 1: Start Ambien (Zolpidem) 10 mg, take 1/2 tablet at bedtime.

• Day 3: Increase Ambien 10 mg to 1 full tablet at bedtime.

• Day 5: Start Lexapro (escitalopram) 10 mg, take 1/2 tablet at bedtime.

• Day 12: Increase Lexapro 10 mg to 1 full tablet at bedtime.

• Make appointment today to follow up with us in 2 weeks. Make sure that your husband can also attend.

24 BRAIN INJURY PROFESSIONAL

(PCP). The case manager might refer them to the local university medical center, where the patient is accepted and assigned a PCP. In another example, a patient has Medicaid. The patient has found a neuropsychiatrist who does not participate in Medicaid but nevertheless agreed to treat the patient. However, Medicaid requires that a participating physician prescribe the medications in order for Medicaid to cover them. To solve this problem, the neuropsychiatrist teams up with the PCP and serves as a consultant to the PCP, who prescribes medications for the patient.

Generic medications may be needed instead of brand-name medications for patients with limited resources. Epocrates (www.epocrates.com) is a good on-line resource for medication information, including comparisons of costs. When considering generics, it is useful to compare the advantages and disadvantages of the medications, including their costs. Have the patient and caregiver give input into the decision.

Conflicting treatment across treating professionals can also occur in these cases, and it is important to maintain good communication between all parties. Without such communication, it would not be uncommon for another of the patient’s physicians to start a new medication within days after we just started a new medication that could have adverse interactive effects. In many cases, a phone call to the other physician can clarify the next step to take in the patient’s overall medication treatment plan.

Case examples Patient who could not remember effects of medications Mr. Johnson was a 42 year old man with moderate traumatic brain injury and trouble remembering to take his medications. His wife agreed to put his medications in a pill box and monitor his use, leading to good compliance. Then it became apparent that both he and his wife had trouble remembering what the effects of medication changes were. We had his wife keep a daily journal of medication effects medications which she reviewed weekly with the case manager. The case manager then summarized the information for the physician, making it easier to manage the medications.

Patient discharged from speech/cognitive therapy for too many no-shows Ms. Scott was a 47 year-old woman with a history of moderate traumatic brain injury. For her cognitive dysfunction, the physician prescribed methylphenidate (Ritalin) and cognitive rehabilitation three times a week with a speechlanguage therapist.

About a month later, Ms. Scott reported to her physician that the speech therapist had discharged her “due to the patient’s lack of interest.” However, Ms. Scott said that she did not request to be discharged, thought the cognitive therapy was helpful, and wanted to continue. She mentioned that she forgot to go to some appointments.

The case manager called the speech therapist, who clarified that Ms. Scott had missed three appointments within the first two weeks of treatment, which according to clinic rules resulted in discharge.

The case manager explained that Ms. Scott forgot to go to her appointments due to cognitive deficits secondary to

her brain injury. She requested that an exception be made and the speech therapist agreed with the provision that a plan be developed to reduce future absences. Accordingly, the patient and case manager agreed to meet more frequently to review and update the patient’s calendar. The patient also agreed to schedule appointments in the afternoon when she had more energy.

Conclusion Managing medications with patients with brain injury requires thinking outside the box. This article has highlighted several methods for building upon the traditional medical model in order to optimize the chances that medications will help the patient as part of an overall treatment approach.

Patient could not get transportation to appointments Ms. Garcia was a 38 year-old woman with a history of mild traumatic brain injury, multiple musculoskeletal injuries and chronic pain. Early in her course of treatment, the physician had recommended weekly follow-ups to adjust medications. However, Ms. Garcia would follow up about every four weeks, leading to slow progress.

Investigation revealed that Ms. Garcia lived 30 miles away, did not drive or have reliable transportation. Her family members were only able to give her occasional rides and she felt that she was a burden. She could not afford to pay for a taxi cab.

After considering options, we decided to supplement face-to-face office visits with telephone appointments. But she still needed to come into our office more than once per month. She had an ongoing lawsuit related to the accident.

The patient’s attorney set up an arrangement with a local taxi cab company who deferred payment for the transportation until her case settled. Overcoming the transportation barrier also increased her feelings of independence, control and self-esteem.

About The Authors Dr. Ross is the Director of the Virginia Institute of Neuropsychiatry and a diplomate in psychiatry, American Board of Psychiatry and Neurology. He completed medical school and a residency in psychiatry at the Medical College of Virginia in 1990. In 1992, he finished a fellowship in neuropsychiatry at the Maryland Psychiatric Research Center, University of Maryland, where he stayed on the faculty for several years. He returned to the Medical College of Virginia in 1997 where he currently serves on faculty as Clinical Assistant Professor in Psychiatry. In 2001, Dr. Ross founded the Virginia Institute of Neuropsychiatry. He is a nationally recognized clinician, educator, and author. His practice areas include neuropsychiatry (e.g. traumatic brain injury, movement disorders caused by psychiatric medication, and pain disorders) and general psychiatry (e.g. anxiety disorders, depression and psychotic disorders).

Lisa Endy Clevinger completed her Bachelor of Science degree in Psychology from James Madison University and her Master of Social Work degree from Virginia Commonwealth University. She has worked in a variety of clinical settings throughout Virginia including community mental health, acute inpatient psychiatry, and private practice. She has over 14 years of clinical experience and has been licensed as a clinical social worker since 1997. She specializes in mood disorders, anxiety disorders, substance abuse, and couples therapy.

Lash &Associates Publishing/Training Inc. We make it easier to understand, help, treat and live with brain injury in children, adults and veterans.

Tip Cards on Behavior

� Why does behavior change after brain injury? � How can families cope with changes in behavior at home? � What do caregivers need to know about managing behaviors?

Our special line of tip cards on behavior after brain injury are written for families, individuals and caregivers with clear explanations, practical tips and useful strategies. They are ideal for educating staff, caregivers and family members in hospitals, rehabilitation programs, community programs and at home.

Written by neuorbehavioral expert, Harvey Jacobs, Ph.D., tip cards include: • Myth and Facts about Behavior after Brain Injury • Minding Behavior: Challenges in adults after brain injury • Behavior at Home (with coauthor Carolyn Rocchio) • Behavior Programs and Behavior Problems • OOPS! Social Skills after Brain Injury Check out the Tip Cards on Adults section on our website at www.lapublishing.com where you will also find a free tip and catalog offer. You can order online or call us at 919-562-0015.

For a free catalog visit our web site at www.lapublishing.com 708 Young Forest Drive, Wake Forest, North Carolina 27587-9040 (919) 562-0015 BRAIN INJURY PROFESSIONAL

25

bip expert interview An Interview with Stanley Seaton, MD Founder of the Tangram Rehabilitation Network About Stanley Seaton

Stanley “Doc” Seaton has been a beacon in brain injury rehabilitation throughout his career. Dr. Seaton was born, raised and completed his medical training in Texas. He graduated from Southwestern Medical School in 1960 and completed a residency in psychiatry and neurology at Parkland and Timberlawn Hospitals in 1964. He subsequently worked as a staff psychiatrist and Director of Partial Hospitalization at Timberlawn Hospital for 10 years before beginning his own private practice in 1974, and founding the Tangram Network in 1978.

Doc remained active in many aspects of the field, supporting clinical, legislative and advocacy efforts to improve the lives of people who experienced disability following brain injury. He has been specially recognized for his efforts to establish training guidelines and materials for staff who work with individuals with brain injuries. Towards these efforts he established the Seaton Foundation which also promotes research in the field. He was also a principal in the founding of the Academy for the Accreditation of Brain Injury Specialists (AACBIS) through the Brain Injury Association of America.

How did Tangram begin?

Tangram began in 1978, but there really was no conscious effort to start it. I had a successful psychiatric practice in Dallas, Texas. A friend of mine approached me in the spring of 1978 about his brain injured son who had been transferred from a rehabilitation facility to a state psychiatric hospital because he had developed severe behavioral problems. I helped him get released and we came up with a plan for him to live with my cousin, Scott Borruff and his wife in San Marcos, Texas. Scott had previously directed a psychiatric half-way house for me. Later that fall I purchased 150 acres outside of San Marcos, but the next three people who entered the program were long-term psychiatric patients. The next person with a brain injury did not arrive until 1982. We needed that time to educate ourselves, develop a workable treatment philosophy and start training our staff.

What ever happened to this first person?

He stayed with us for almost three years before returning to Waco where he now lives and works independently.

Why San Marcos?

First, Scott and his wife lived there and helped me with my friend’s son.

Second, I loved central Texas with its rolling hills, lakes and streams, trees and the best weather in Texas. San Marcos was a small town, away from the hustle and bustle of a big city, yet accessible. We relied on it for shopping, bowling and eventually a multitude of contacts. It also had a college of 15,000 students and was just 30 miles from Austin. I thought that it was important for people to have a place that was calmer and less demanding, but that also helped them take control of their lives 26 BRAIN INJURY PROFESSIONAL

and daily responsibilities again. I wanted a small town but I immediately began looking for rural property which I bought within two months.

The Ranch became our home base with a pleasant ranch house, barns, fenced pastures, a good sized lake with fish and ducks, and so on.

So you left Dallas for San Marcos?

Not for quite some time. I continued to commute back and forth between Dallas and San Marcos, initially on weekends and then spending more and more time at Tangram until I finally moved there permanently 10 years later.

I understand that Tangram was not the program’s first name.

It was our first official name, but unofficially, my Dallas practice manager first called it Seaton’s Folly! She was not only sure that it would fail, but that it would take the whole practice down with it! The name Tangram represents a five sided Chinese puzzle that you can put together in many different ways – much like life.

Tangram is regarded as one of the first, if not the first neurobehavioral program in the country. Was behavior modification your initial focus?

Our focus from day one was on people and relationships. I’ve always believed that nothing happens unless there is clear communication and respect between people regardless of their roles, abilities or disabilities, or pathways in life. We recognized very early that we had to start where each person was when they entered Tangram and move at their speed. This was about their lives, goals and timelines, not ours. It was absolutely critical to incorporate their personal interests into the daily structure and to work closely with each person. We raised animals together, plowed gardens together, fixed cars together, went on vacations together, sang together, cried together, etc. This established strong ties, close relationships.

Communication and trust were essential. Residents were involved in their personal treatment team meetings with staff early on. It turned out that staff had a harder time adjusting to this than the residents. We believed that people had a right to know about and be involved in all aspects of their lives. At each meeting, each resident and staff together would come up with 10 or 20 small, but important goals to accomplish over the next two weeks that also related to the resident’s big picture of what they

were trying to accomplish at Tangram. This helped to keep everybody focused and working together.

The behavioral programming provided us with critically important guidance and structure; perhaps even more so for the staff than the clients. However, it was useless without the caring, productive and collaborative culture that developed early on at Tangram.

Some people have the concept that Tangram was a big ranch in the middle of nowhere in Texas!

The first house was outside of town to give people space and peace to begin to re-establish their lives. This was solely for each resident’s benefit and not to protect the community from “dangerous behaviors.”

However, from the beginning we believed that people needed to live meaningful lives and not be sheltered. This included, within each person’s abilities, the tasks involved in living in a house and caring for one self. We found that most people wanted to work and their self esteem grew as they saw themselves earning their way.

We spent a lot of time in the community. As Tangram grew we integrated more within San Marcos. People lived anywhere from the ranch to the city according to their needs and interests. When we started working with adolescents, we created an accredited school to promote their meaningful education. We had basketball and baseball teams that competed with other teams in town. Yes, we had a greenhouse, but it was an actual business that we took over in San Marcos. We sold our plants and services to people in the community just like any other nursery. This helped support the enterprise, but more importantly it fostered normal and productive relationships between Tangram residents and other people in the community.

We found that most people wanted to work, be involved with others and did not like to be cared for. We worked hard to help them identify their personal interests and to create practical daily activity patterns around these interests. People got paid for their work, whether at the greenhouse, bookstore, auto shop, helping to build buildings, orient new residents, or in bona-fide jobs outside of our program. Clients who grew vegetables sold them to the program at market price – something that they determined by going to the local grocery store to learn what their produce was worth. People who raised animals sold them at local markets and kept the profits. They also purchased their animal feed at the local feed store thereby interacting with people in San Marcos. This in turn increased local community support and involvement with Tangram.

For example, we had a lot of San Marcos citizens join us at Tangram’s annual fair as well as other events. Taken in this perspective, the actual location and physical layout of the program was a “minor” detail.

As a new type of program, how did you find the right staff?

It took some time, but the bottom line was to find caring, optimistic and smart people with strong moral character and self-respect. We had zero tolerance for people with problems of drug or alcohol abuse, dishonesty, poor attendance, narcissism, etc. We had too much to do and staff had to be models for our residents and our community. It became just as important to guide and monitor the staff as the residents.

Staff came from all walks of life, which was important since our residents did as well. People have to be able to relate to one another.

People also had to commit to long hours and getting their hands dirty, literally. wasn’t interested in anybody who wasn’t willing to dig in the garden or do what ever was required to keep the program going.

From the beginning we knew that professional knowledge in the field, the little that was available at the time, was crucial. However, at the same time, the full-day schedule at Tangram did not lend itself to hourlong blocks of therapy that was then the custom. So, over the years we looked to professional consultants for guidance, but we also spent an

enormous amount of time training our staff. We started training staff about behavioral therapy via informal sessions. We then went to formal 2 – 3 hour seminars and added training on cognitive issues and other topics so that staff could truly appreciate how each resident thought and more importantly, felt. In short order we formalized the training (as well as our data collection and research) through the Seaton Foundation.

Staff participated in two weeks of formal training at the start of their jobs with continual training throughout their employment. Much of the content and structure of our training program was adopted by American Academy for the Certification of Brain Injury Specialists (AACBIS) when it was founded. I was proud to be a part of that.

Training had an important effect on staff. They learned that they were capable and responsible for their lives and the lives of others. Residents also started learning this and would teach one another. We created an environment where there was open communication between all parties. We all quickly learned that nobody had absolute knowledge or authority. It was okay to challenge each other. Residents also had the right to catch staff thinking poorly. For example, staff could sometimes be caught telling a resident that they HAD to do something, to which the resident would reply that they did not HAVE to do anything. This helped encourage staff to drop absolutes and become more collaborative. It was imperative to create a psychologically healthy and ethically sound community. I knew that we were on the right track when staff began seeing and responding to residents for who they were rather than what had happened to them. … and the community focus?

Absolutely essential! Helping people put their lives together after a brain injury is tough and time consuming work. It’s intense, emotional and a privilege to be part of other’s lives. You just can’t make it unless you are committed and having fun; and that takes a supportive community. The Tangram community extended out to the families of people we served and others involved directly and indirectly in the program. Don’t get me wrong, we clearly had our ups and downs over the years, but we had the ability as a team and as an inclusive community to share the successes and weather the storms.

How did Tangram influence so many people outside of your program?

We had an open system of sharing what we knew with others and others freely shared with us. It was a win-win situation that ultimately helped everybody. Over the years we had countless visitors from around the world and benefited immensely from their contributions. Other groups such as Anagram in Canada and TRURehab in Great Britain adopted our model and we worked closely with them. We set up exchange relationships with a number of programs. Some of our staff would work at another program while staff from that program would work with us. It was a great way to learn a lot, be inspired and inspire others.

Are you still involved?

No. We (Tangram was a corporation owned by the staff) sold the program a decade ago. I still keep up with a lot of past staff and residents. There is not a week that goes by that I don’t hear from all types of people who were involve in Tangram. It is my understanding that the present program has evolved in different directions.

Any last comments?

I am very fortunate to have had 20 years developing a dream of mine.

It was possible only because of the wonderful people who were put in our care and the dedicated staff who also were empowered through this experience. This was a special time for us.

We became family and also fitted our biological families into this bonding. I will always be grateful.

BRAIN INJURY PROFESSIONAL

27

Applied Behavior Analysis Evaluation Strategies and Neurorehabilitation

by Michael P. Mozzoni PhD, BCBA/CBIST Many people equate Applied Behavior Analysis (ABA) with behavior modification. However, ABA is distinguished from a wider range of practices intended to change behavior by its emphasis on empirical (verifiable and reproducible) and ecologically valid (relevant to the person and immediate situation) procedures.

ABA has been defined as: “the science in which procedures derived from the principles of behavior are systematically applied to improve socially significant behavior to a meaningful degree and to demonstrate experimentally that the procedures employed were responsible for the improvement in behavior.1” Many other behavior modification techniques do not require this rigor.

When properly applied, ABA can be a useful and collaborative discipline in brain injury rehabilitation. It can be incorporated with many other approaches and philosophical orientations.

Most people associate ABA with behavioral treatment interventions. However, ABA’s emphasis on operational behavioral definitions and single-subject evaluation strategies are of particular value across treatment discipline in rehabilitation settings.

Operational Definitions Operational definitions are precise descriptions of a person’s actions. A good operational definition defines the behavior of interest in a manner that is observable and measurable. Others using the same operational definition could also agree to the presence or absence, as well as the quality of the behavior.

28 BRAIN INJURY PROFESSIONAL

This can help improve team coherence and communication in many settings. For example, identifying that a child “cooperates in class” does not constitute an operational definition. It is too broad. Just what does “cooperation” mean? Does it involve sitting quietly in class, or playing in the school yard, or filling out a math worksheet, or filling out a math worksheet correctly, etc.? Two people independently working to increase this child’s classroom cooperation without first agreeing on goals and focus could end up working on two very different things to the student’s detriment.

Here, an acceptable operational definition would involve defining one specific element that the teacher, team, parents and student could agree upon. Operational definitions must be explicit rather than implicit. They must: (1) be objective and refer to observable aspects of the behavior (and environment if needed); (2) be clear, unambiguous and precise; and (3) be complete i.e., state what is an instance of the behavior and what is a non-instance1. The best way to test an operational definition is via simultaneous observations by more than one person and then comparing results to determine if there was agreement to the presence or absence of the behavior.

Properly designed operational definitions can provide critical precision when managing complex rehabilitation cases or in any situation where a multitude of simultaneous factors are being addressed. Each factor may have its own concurrent operational

Single Subject Designs Behavioral units of measurement created from operational definitions allow for direct analysis of treatment effect within individual differences. This is especially important given the individuality of each person and each brain injury. What social interaction constitutes for one person may be very different than for another person, as may be topics of communication, agitation, work, intimacy and so on. ABA recognizes that each person is unique and must be individually evaluated2. Assessment, intervention and evaluation of effect are directly tied to the individual and not to statistical norms. Such norms can be useful in determining a person’s standing relative to others within a given situation, but they rarely direct specific rehabilitation efforts and are typically not sensitive enough to identify practical change. Properly construed behavioral measures offer unique field validity by virtue of measuring behavior in a person’s actual environment. Although originally designed for research, they are powerful tools in ongoing case management and treatment evaluation.

Single subject designs reflect direct changes in a person’s behavior (dependent variable) as a result of changes in other elements (independent variable) such as treatment technique, medications, environments, people, etc. These designs help document functional relationships between the behavior of interest and selected interventions; in other words that “A” actually causes “B.” This is preferable to correlative evaluation strategies that may identify relationships between events -- when A occurs, B is also present, but may not actually cause B. This is a much weaker relationship as variables that occur together, but do not demonstrate functional causality typically have limited treatment effect and can waste precious treatment resources. For example, everybody who abuses drugs also drinks water, but this does not mean that water causes drug abuse!

Single subject designs utilize repeated measures to evaluate behavioral trends and stability prior to and after an intervention has been implemented. Data are first repeatedly collected under present conditions (baseline) until a trend for that behavior is noted. For example, a behavior may consistently occur at a higher or lower rate than desired, may be increasing or decreasing over time, or may even “consistently” fluctuate wildly. Once a trend is noted, the intervention is implemented with continued data collection. This may involve a change in medication, a new way of teaching a skill, introduction of a new caregiver, reorganizing a daily schedule, etc. Subsequent changes in behavior may then be attributed to the introduction of this intervention, provided that other variables have been controlled.

Single subject designs are sensitive to individuals and individual treatment effects. However, they can be vulnerable to contamination from extraneous variables that may co-occur. For example, the efficacy of a new cueing technique to improve sequencing skills may be called into question if medication chang-

es also inadvertently occurred at the same time. Still, by virtue of their reliance on repeated measures, single subject evaluation designs will likely pick up such contamination faster than other evaluative methods. This can facilitate more responsive adjustment of treatment and a better understanding of what variables may effect presenting behavior.

Several popular single subject designs have broad applicability3. As its name implies, reversal designs3 evaluate behavioral changes as an intervention is introduced or removed. Reversal designs (A-B-A) usually start with a baseline condition which reflects the current situation (A condition), followed by implementation of the intervention (B condition) until the presence or absence of a treatment effect is noted, followed by a return to the baseline condition to determine if there is a corresponding reversal of effect. While this may appear counter intuitive, especially if a treatment appears to be working (in which case why change it?), reversing the treatment can help to determine if the intervention itself was responsible (i.e., the behavior returns to baseline levels) or if something else, possibly not accounted for was responsible for the change. In such cases the behavior is not likely to return to baseline levels as that variable may still be in effect. Interventions proved effective by such analysis can usually be re-started to accrue the noted beneficial effects (e.g., an A-B-A-B design).

Reversal designs effectively evaluate state dependent variables where the presence or absence of such variables have an effect.

This can include medications, staffing schedules, use of antecedent (cue) or consequence strategies, specific treatment techniques, etc. However, reversal designs are sensitive to learning effects, e.g., when the intervention is designed to teach a person skills that they can subsequently use independently. Here we would not expect the behavior to return to baseline levels when the intervention ends. We would expect that the client could then independently continue the skill with the supplied knowledge. Additionally some treatment effects may not be considered appropriate or ethical to reverse if a corresponding change in behavior occurs.

Figure 1 represents a reversal design (A-B-A-B) to compare the effects of massed trials of reading vs. distributed trials of reading. The child was an 11 year old male who was four years post injury. He exhibited challenging behaviors in the classroom and could read letters and numbers but not simple words. Massed trials consisted of a sheet of 50 consonant – vowel – consonant words he was to read sequentially. Distributed trials consisted of placing single words from this list on individual cards and

Reversal design comparing Massed vs.

Distributed trial presentations.

figure 1

Reading: Consonant-Vowel-Consonant (CVC) 80 Average Number of Words Read per Minute

definition. Critics contend that operational definitions can be too limiting or arbitrary for the sake of easy measurement. This can be valid when people are not properly trained to define behavior, do not understand the person’s true outcome goals, or are not directly involved in the situation. Well constructed operational definitions can pick up the nuances of the situation and relevant factors that are critical for success. Effective operational definitions are vital in focusing the team. They help everybody; including the client understand the nature and focus of intervention and how to determine efficacy.

Mass Trial CVC

70 60

Distributed Trials CVC

Mass Trial CVC

Distributed Trials CVC

50 40 30 20 10 0 1

2

3

4

5

6

7

Words per Minute

8

9 10 11 12 13 14 15 16 17 18 19 20 Reading Class Sessions Timing per Seconds

BRAIN INJURY PROFESSIONAL

29

Consumer FIM score changes across targeted areas and therapists

FIM Score

figure 2 7 6 5 4 3 2 1 7 6 5 4 3 2 1 7 6 5 4 3 2 1

T-Change time of therapy and reinforce attending

Baseline

Speech Therapist Comprehension - Client 1 T-Work on outcome related tasks

Occupational Therapist Grooming- Client 2 T-Practice the skill more than once and reinforce participation

Nurse Bed-Chair Transfers Client 2

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

Weeks

breaking up individual word presentations with easy tasks (coloring, ring toss, shoe tying) between reading trials. The child was timed to measure how many words he could read per minute.

Treatment effects were rapid and obvious; the child preferred the single word presentations interspersed with easier activities. Following this fluency training the child was able to read on a grade K-1 level within six weeks.

Additive designs (A-B-C-B…) are permutations of reversal designs where each condition represents variances of treatment approaches. For example, this design can be used to evaluate the effects of different medication levels on performance. Additive designs allow for comparison of different interventions or levels of intervention against one another. They are not considered as robust as pure reversal designs since baseline conditions are rarely reinserted. There can also be the possibility of collateral effect from a previous condition at any given time.

Hall et. al4. investigated cognitive side effects in a woman with epileptic encephalopathy, recurrent depression and ABI who was taking Fluoxetine. She was routinely asked 12 orientation questions to assess for medication side effects. When the Fluoxetine was increased, orientation appeared to deteriorate and she was reported as becoming “stuck” during ADL activities. When the dosage was reduced and ultimately discontinued, concomitant improvements were noted.

Multiple baseline designs can assess acquisition and generalization across differing tasks, individuals or groups3. Functional control is demonstrated through replication of effect across these settings. Once stable rates of behavior are initially noted across all settings, intervention is implemented in one setting while other settings remain in baseline conditions. If behavior changes in the intervention setting, but remains constant in the other settings then intervention effect can be inferred. Sequential application of the intervention across the other settings, with corresponding changes in behavior further substantiates effect.

Multiple baseline methods are essentially A-B designs that are replicated in a staggered (time series) sequence. They are good for studying behaviors that are not expected to change once the skill is acquired.

As Figure 2 represents, a multiple baseline design was used to evaluate the effects of a therapist training program among clients who were not progressing in an acute neurorehabilitation 30 BRAIN INJURY PROFESSIONAL

program5. A nine-part decision matrix was developed to observe therapists working with clients and suggest changes in treatment approach. Two clients, two therapists and a nurse took part in the study. Therapists were sequentially given feedback based upon the decision matrix. Both clients made rapid progress and became more independent in grooming, transfer mobility and comprehension once the therapists were given feedback on treatment techniques.

There are other single subject designs, but these are the most frequently used approaches. The key to all single subject designs involves their direct focus on the client relative to his or her specific goals and resources. Critics of single subject designs cite concerns about lack of generalizability across other people or situations because of the unique within-person focus of this evaluative approach. Generalization of effect is demonstrated by subsequent application of treatment effect across other people and/or situations, one at a time. The aggregate effect (or lack there of ) becomes indicative of the level of generalization.

Single subject evaluation techniques are well suited in rehabilitation and support settings where there is an individual client focus. Here, group evaluation designs are often untenable due to an insufficient number of subjects for statistical analysis.

Though more popular, group designs are not necessarily more powerful or definitive than properly constructed single subject evaluations.

Single subject designs are not only for research. They offer significant utility to empirically managing a multitude of clinical, educational, training, operational and staff management practices within the daily operations of most programs. Contrary to some mis-perceptions, they are not solely used for behavior analytic interventions, but can be easily integrated with other disciplinary and theoretical approaches to improve program precision, clinical / living quality and cost effective outcomes.

References:

1. Cooper, J., Herron, T., & Heward, W. (1987). Applied behavior analysis. Upper Saddle River, N J: Prentice-Hall, Inc. 2. Bear DM, Wolf MM, Risley TR. Some dimensions of applied behavior analysis. Journal of Applied Behavior Analysis 1;1:91-97, 1968 3. Barlow DH, Hersen M. Single case experimental designs: Strategies for studying behavior change (2nd Ed.). Pergamon Press, New York, 1984.

4. Hall T, Barrera RD, Randon M. Reversible memory loss following treatment with Fluoxetine: A case study. Behavioral Interventions. 15;3:217-224, 2000.

5. Mozzoni MP, & Bailey JS. Improving training methods in brain injury rehabilitation. Journal of Head Trauma Rehabilitation. 11;1:1-17, 1996.

About the Author

Michael Mozzoni is the Regional Program Director for Learning Services Neurobehavioral Institute in Lakewood, CO. He is a board certified behavior analyst and certified brain injury specialist clinical trainer who has worked with persons with brain injuries since 1985. He holds a Ph.D. in applied behavior analysis from Florida State University and a M.A. in experimental psychology from Harvard University. Dr. Mozzoni’s research interests include effective and efficient methods of training, staff turnover and treatment outcomes. He has served as an adjunct professor in Pediatric Neurology at Vanderbilt University Medical School, has authored articles in major publications and is a nationally recognized expert in behavior management and skill acquisition. Dr. Mozzoni serves on the editorial board of Behavioral Interventions, is Chair of the International Association for Behavior Analysis -- Rehabilitation and Independent Living SIG, a board member of the American Academy for the Certification of Brain Injury Specialists, and a member of the American Congress of Rehabilitation Medicine Aging with Brain Injury ISIG.

conferences

Building futures…

2009 MARCH 9-13 – 20th Anniversary of the International Center of Neurological Restoration (CIREN), Palacio de las Convenciones, La Habana, Cuba. Contact: rn2009@neuro.ciren.cu, on the web: www.ciren.ws.

12-13 – First International Conference on Culture, Ethnicity, and Traumatic Brain Injury Rehabilitation, Washington, D.C. For information about the conference and poster submissions contact Juan Carlos Arango, Ph.D., USA; jcarangolasp@vcu.edu, tel. 804 828-8797.

26-28 – The New York Academy of Traumatic Brain Injury 12th annual multidisciplinary conference: Traumatic Brain Injury: The Treatment Imperative. NYU Hospital for Joint Diseases, New York, NY. For more information/registration: www.nyatbi.net.

MAY 7-9 – International Vocational Outcomes in Traumatic Brain Injury, Empire Landmark Hotel & Conference Centre, Vancouver BC Canada.

Contact: Shelley Johnson at 604-875-1755 or on the web: www.tbicvancouver.com JULY 8-10 – SickKids Centre for Brain & Behavior 1st Annual Symposium: Brain Injury in Children, Four Seasons Hotel, Toronto, Canada. Contact: www.sickkids.ca/learninginstitute or Miriam Wexler, tel. 416-813-7654, ext. 28120.

AUGUST 12-15 – MTBI 2009 – International Conference on Mild Traumatic Brain Injury, Vancouver, BC, Canada August 12 – 15, 2009. Contact: www. mtbi2009.org 27-30 – The First International Congress on Clinical Neuroepidemiology, Munich, Germany www.neuro2009.com.

For more information:

(800) 774-5516 425 Kings Highway East, P.O. Box 20 Haddonfield, NJ 08033-0018 USA www.bancroftneurohealth.org Bancroft NeuroHealth, a New Jersey Non-Profit Corporation

For more than 125 years, Bancroft NeuroHealth has helped people with neurological and related disabilities rebuild their lives, step by step.

The goal of our person-centered programs is to help each person reach his or her maximum level of independence and lead the most fulfilling life possible.

With a range of community-based and campus-based options, Bancroft provides a full continuum of life skills rehabilitation for people with acquired brain injuries at several locations in New Jersey. These include a return to school, work, social and recreational activities.

Our outcomes-oriented planning encourages personal achievement — leading to both greater independence and reduced costs.

More than

Traumatic Brain Injury Serving the community for two decades, Beechwood has expanded its TBI offering to encompass broad neurological services as well as new Behavioral Remediation and Late Adolescent programs.

In addition to TBI, we serve individuals with brain damage due to: • Anoxia/Hypoxia due to drowning, heart attack, drug overdose, alcohol poisoning, anesthesia errors, etc.

• Electric shock/lightning strike • Degenerative diseases • Infectious diseases • Early stage moderate dementias • Tumors • Brain surgeries • Many neurological disorders

• Stroke

2010

For information and admissions, call 1-800-782-3299.

Our facilities are adapted to accommodate all levels of accessibility.

MARCH 10-14 – 8th World Congress of the International Brain Injury Association, Washington, DC. Contact: www.internationalbrain.org.

MAY 23-27 – 17th European Congress on Physical Medicine & Rehabilitation, Venice, Italy. Contact: www.esprm.org.

REHABILITATION

SERVICES

A Community-Integrated Brain Injury Program An affiliated service of Woods Services, Inc. www.beechwoodrehab.org

Langhorne, PA • Bensalem, PA BRAIN INJURY PROFESSIONAL

31

legislative round-up Susan L. Vaughn, Editor, Legislative Issues “Politics is the art of the possible.�

Otto Von Bismarck

A new Congress and Administration will assume office in January, which is named after the god Janus who has two faces for looking backwards into the old year and forwards into the new one at the same time. Like Janus, the 111th Congress will be finishing up business from the old 110th Congress, as well as focusing on the challenges ahead for improving the health, economic and energy issues of this country.

With regard to unfinished business it is anticipated that the new Congress will finalize the remaining fiscal year (FY) 2009 spending bills in January in hopes of resolving the funding issues before the new President releases his FY 2010 budget. Since October 1, most federal programs have been operating under a Continuing Resolution (CR) extending funding through March 6, 2009, at the same funding level as the previous fiscal year.

Prior to the CR, the House Appropriations Subcommittee on Labor -- Health and Human Services (HHS) -- Education recommended an additional $2 million for the Health Resources and Services Administration (HRSA) Federal TBI Program and a $1 million increase for Centers for Disease Control and Prevention (CDC) TBI programs. The House Subcommittee also included $10 million in funding for trauma systems, while the Senate Subcommittee recommended no funding for the program. The Senate Appropriations Subcommittee recommended a $2 million increase for the National Institute on Disability and Rehabilitation Research (NIDRR) to support health and function research. Advocates have urged appropriators to adopt the higher levels proposed for TBI research, prevention, trauma, protection & advocacy and state services provided by these federal programs.

On October 3rd, the 110th Congress passed and the President signed the Paul Wellstone and Pete Domenici Mental

32 BRAIN INJURY PROFESSIONAL

Health Parity and Addiction Equity Act of 2008 that requires health insurance plans offering mental health and addiction coverage to provide equal coverage to that offered for other physical illnesses.

Looking ahead, disability and health care legislation introduced in the past will be re-introduced. Senator Edward Kennedy (D-MA), Chair of the Senate Health, Education, Labor and Pensions (HELP) Committee, will re-introduce the Community Living Assistance Services and Supports (CLASS) legislation to create an national insurance program for adults who become functionally disabled. Senator Kennedy, a strong supporter of long-term care and community supports, encourages disability advocates to work with Congress to include these benefits in the health care debate.

Reauthorization of the Substance Abuse and Mental Health Services Administration (SAMHSA) and the No Child Left Behind Act are also priorities. Other programs due to be reauthorized include the Individuals with Disabilities Educa-

A new Administration and Congress presents an excellent opportunity to promote awareness of brain injury issues and to incorporate them into national priorities. The Congressional Brain Injury Task Force Brain Injury Awareness Day has been set for March 25, 2009, and advocates are encouraged to participate. tion Act (IDEA), Developmental Disabilities Assistance and Bill of Rights Act, Workforce Investment Act and the Rehabilitation Act. In response to the death of a high school athlete, Rep. Bill Pascrell, Jr. (D-NJ), co-chairman of the Congressional Brain Injury Task Force, introduced the Concussion Treatment and Care Tools (ConTACT) Act to assist schools in concussion screening technology and concussion management. The legislation was developed by Rep. Pascrell, Rep. Todd Platts (R-PA) and the Brain Injury Task Force with consultation from the Brain Injury Association of America, the New Jersey Brain Injury Association, the National Association of State Head Injury Administrators, the Athletic Trainers Society of New Jersey, and the New Jersey Office of Disability Services.

The legislation will be reintroduced in the new session.

Disability organizations have conveyed their priorities to

the new Administration. The Consortium for Citizens with Disabilities (CCD) has recommended additional funding for a temporary Medicaid increase in federal matching funds; to reduce Social Security disability backlogs; for the Veterans Affairs health care system; the new Section 8 housing vouchers, and reinstatement of an executive order to hire qualified individuals with disabilities in the federal government. CCD has also urged the Administration to sign the UN Convention on the Rights of Persons with Disabilities.

Similarly, the Disability and Rehabilitation Research Coalition, a coalition of national non-profit disability and health care organizations, transmitted a letter to the transition team calling for significant increases for federal agencies conducting disability and rehabilitation research and/or knowledge translation of that research. The ARCH National Respite Coalition and National Partners have also sent a letter requesting funding as authorized by the Lifespan Respite Care Act. A new Administration and Congress presents an excellent

opportunity to promote awareness of brain injury issues and to incorporate them into national priorities. The Congressional Brain Injury Task Force Brain Injury Awareness Day has been set for March 25, 2009, and advocates are encouraged to participate. Events will include an Awareness Fair in the Rayburn House Office Foyer, followed by a round table discussion and a reception. For further information you may contact either the offices of Rep. Pascrell or Rep. Platts. By working together, all things are possible to improve service delivery for individuals with brain injury.

About the Editor

Susan L. Vaughn of S.L. Vaughn & Associates, consults with states on service delivery and serves as the Director of Public Policy for the National Association of State Head Injury Administrators. Ms. Vaughn retired from the State of Missouri after nearly 30 years, where she served as the first director of the Missouri Head Injury Advisory Council. She founded NASHIA in 1990, and served as its first president.

BRAIN INJURY PROFESSIONAL

33

non-profit news Brain Injury Association of America BIAA proudly adopted the Journal of Head Trauma Rehabilitation as the Association’s exclusive scholarly journal, and we will host Mitch Rosenthal Memorial Lectures beginning in 2009. During our Annual Meeting of Members, held Dec 3-5 in Kansas City, Phil Clarkson, MS; Guy Clifton, M.D.; David Hovda, Ph.D.; Bob Longo, MS; Sharon Meagher, CMP, CCP; and Brent Masel, M.D., were elected to the Board of Directors. BIAA presented the 2008 Founders’ Award—our highest honor—to Tina M. Trudel, Ph.D. In a recent meeting with President-elect Obama’s transition team, we called for greater access to care and increased funding for rehabilitation research, including expansion of the TBI Model Systems, including new centers for children/adolescents. Planning is underway for BIAA’s Litigation Strategies Conference, scheduled for April 2009 in Las Vegas, and the Academy of Certified Brain Injury Specialists is now accepting online applications. Please visit www. biausa.org for more details.

International Brain Injury Association IBIA is pleased to announce that the Eighth World Congress on Brain Injury will be held March 10 - 14, 2010 in Washington, D.C., USA. We would like to invite the participation of all professionals involved with serving persons with acquired brain injury to this international Congress and meeting of minds. We are very excited about having the meeting in the United States and in particular, its capital, Washington, D.C. This is the first time in IBIA’s history that a World Congress has been held in the USA. Aside from a wonderful scientific program with world renowned experts in the field of brain injury, we are also continuing other special features including scientific poster and paper presentations, candlelight sessions with experts, and IBIA’s various awards, including the Henry Stonnington Award for best review article in Brain Injury (IBIA’s officially endorsed organizational research journal), the Jennett & Plum Award for Clinical Achievement in the field of brain injury medicine, as well as The Safe Car of the Year Award. There will also be a post-conference symposium on disorders of consciousness in addition to workshops on neuropharmacology, neuroethics, controversies in neuropsychology, visual assessment and rehabilitation, community reintegration, educational reentry issues, as well as, return to work. There will also be some new features added to the conference which we hope all attendees will find educationally beneficial. We also look forward to having a wonderful exhibitor turnout to further complement the conference networking and learning experience. As usual, we are also planning a number of wonderful social events, including a few surprises, as well as, opportunities to further explore and appreciate the culture and diversity that represents our US capital of Washington, D.C. More information will be available on our website, www.internationalbrain.org.

34 BRAIN INJURY PROFESSIONAL

National Association of State Head Injury Administrators The FY 10 appropriations process is underway. The HRSA Federal TBI Program needs an increase in appropriations to at least $21 million to meet the intent of the legislation. Be sure to contact your Congressional representative to have them join the Congressional Brain Injury Task Force and explain to them the need for more funds.

With the economic situation, NASHIA is concerned about the impact on state budgets and their ability to provide TBI services and supports. Be sure to track your state activities as new policies are being formed. This is a particularly critical time with the returning servicemembers with TBI that may first seek services in state systems.

The National Association of State Head Injury Administrators’ 20th Annual State of the States in Head Injury Meeting will be held in Santa Fe, New Mexico October 27-30, 2009 at the El Dorado Hotel. The State of the States in Head Injury Conference (SOS) is the only national meeting providing professional development opportunities among state government program administrators in the field of traumatic brain injury. Watch www.nashia.org for the latest information on the conference schedule and registration information.

Check out the NASHIA website (www.nashia.org) to obtain the latest information on state systems development to meet the needs of individuals with brain injury and their families.

North American Brain Injury Society The 2008 NABIS Conference on Brain Injury was held in the “Big Easy” in October 2-4, 2008. Close to 450 professionals attended, including physicians, psychologists, clinicians, therapists and attorneys.

Featured Plenary Speakers included Dr. John Corrigan, Dr. Debra Braunling-McMorrow, and Dr. Elizabeth Wilde. The three-day conference, dedicated to moving brain injury science into practice, featured four pre-conference workshops, over 30 individual sessions, 3 Expert Panels, 36 peer-reviewed abstracts, and 11 poster presentations. Abstracts of the submitted papers were published in the Journal of Head Trauma Rehabilitation. Conference speakers covered topics such as advanced neuroimaging, TBI and psychiatric illness, the neural basis of TBI, TBI and violence, blast injuries, PDA and smartphone technology, lifelong TBI challenges, medication management, and outcome measurement.

Four Annual NABIS Awards were given to: Dr. John Corrigan (TBI Research) Michael Davis (Advocacy and Public Policy) Dr. Jim Schraa (Innovative Clinical Services), and Dr. Roberta DePompei (NABIS Legends Award) A new scholarship program in honor of Charles W. Haynes was created by a generous grant from the Seaton Foundation to recognize and support the work of four new brain injury specialists. These scholarship awards, along with the Randy Evans Award for Clinical Service, will be awarded each year through competitive application.

NABIS is already hard at work planning our 2009 Conference, which will be chaired by Harvey Jacobs, PhD, of Richmond, Virginia. Details on the 2009 event will be available at www.nabis.org.

Acquired Brain Injury Services x NeuroRehabilitation x NeuroBehavioral x Supported Living x Adolescent Integration x Host Home x Outpatient Services x Day Treatment x Respite Program Locations: CCS-Carbondale, IL, CCS-Florida, CCS-Kentucky, CCS-New England, CCS-Tennessee, REM IA, REM CO, REM MN, REM Health, IL MENTOR, SC MENTOR, NJ MENTOR Brain Injury Services & CareMeridian-CA.

www.mentorabi.com

800-203-5394

36 BRAIN INJURY PROFESSIONAL