BR A IN INJURY professional vol. 6 issue 2
The official publication of the North American Brain Injury Society
Cognitive Rehabilitation: Efficacy and Best Practice
A S u m m a r y o f Evidence: T he Eu r o p e a n G uidel ines f or Cognit ive Reh ab ilit at io n E v i d e n c e - B a s e d Practice: R e m i n d e rs a n d Updates for Clinicians Who Treat C og ni t i ve - C o m muni cati on Di s orders aft er B rain In ju ry D e ve l o p i n g a n d Understanding an E v i de n c e Ba s e in Rehabil i tation C og ni t i ve R e h a b il i tation f or Chil dr en an d Yo u t h : M ov i n g To wa rd C ol l abor ative Partnersh ip s C og ni t i ve R e h a b il i tation i n A ction i n New Zealan d BRAIN INJURY PROFESSIONAL
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contents
BRAIN INJURY professional vol. 6 issue 2, 2009
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 Liaison Skye 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
23 Obituary brain injury professional
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
30 bip expert Interview 32 Non-profit News 34 Legislative Round-up
EDITORIAL ADVISORY BOARD B R AIN INJURY professional vol. 6 issue 2
The official publication of the North American Brain Injury Society
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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
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features 8 A Summary of Evidence: The European Guidelines for Cognitive
Rehabilitation by Stefano F. Cappa, MD 10 Evidence-Based Practice: Reminders and Updates for Clinicians Who
Treat Cognitive-Communication Disorders after Brain Injury by McKay Moore Sohlberg, PhD, Mary R.T. Kennedy, PhD 16 Developing and Understanding an Evidence Base in Rehabilitation By E Diane Playford, MD 20 Cognitive Rehabilitation for Children and Youth: Moving Toward
Collaborative Partnerships by Juliet Haarbauer-Krupa, PhD 26 Cognitive Rehabilitation in Action in New Zealand by Shona Paterson, Robyn Pooley, Lucy Wedgewood McKenzie, Janis Henry, and Penny McGarry
editorial inquiries 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
advertising inquiries 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. Š 2009 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
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president’s message
Ronald Savage, EdD The treatment of cognitive problems has long been recognized by clinicians as a significant component in the rehabilitation of individuals after brain injuries. As Dr. Keith Cicerone has stated “95% of rehabilitation facilities serving the needs of persons with brain injuries provide some form of cognitive rehabilitation, including combinations of individual, group and community based therapies.” (2000). In the past 15 years, the practice and the science of cognitive rehabilitation has expanded and we are responding to questions regarding the efficacy of cognitive rehabilitation, who will pay for it, and how cognitive therapy is best practiced. Our Guest Editor, Kit Malia, MPhil, CPCRT, an internationally recognized expert in cognitive rehabilitation, and his exemplary author team, address many of these concerns in this issue of BIP. Many of us understand that the models of cognitive rehabilitation can vary along several different dimensions. Treatments may be process specific and focus on improving a particular cognitive domain (e.g., attention, memory, language, or executive functions) or treatments may
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be skill-based and aimed at improving performance of particular functional activities. Along with our increased use of cognitive therapy strategies, the evidencebased study of cognitive rehabilitation is growing every day. As Kit Malia notes, “There is now a large body of ever-growing published data specifically looking at cognitive rehabilitation… a new article every six hours of my working day.” In the past decade, several groups have adopted cognitive rehabilitation treatment guidelines and position statements have been distributed by US and international organizations, including the Academy of Neurologic Communication Disorders and Sciences; American Congress of Rehabilitation Medicine; Brain Injury Association of America; American Speech/Language/Hearing Association in conjunction with Division 40 (Clinical Neuropsychology) of the American Psychological Association; British Society of Rehabilitation Medicine in collaboration with the Royal College of Physicians; Cochrane Collaboration European Federation of Neurological Societies; National Academy of Neuropsychology; and the Society for Cognitive Rehabilitation. In addition, the National Institutes of Health (NIH) “Report of the Consensus Development Conference on the Rehabilitation of Persons with Traumatic Brain Injury” (September 1999) concluded: “Evidence supports the use of certain cognitive and behavioral rehabilitation strategies for individuals with brain injury in particular circumstances. These interventions share certain characteristics in that they are structured, systematic, goal-directed, and individualized and they involve learning, practice, social contact, and a relevant context.” Similar guidelines regarding cognitive rehabilitation have been put forth by the Task Force on Cognitive Rehabilitation under the auspices of the European Federation of Neurological Societies (EFNS). Among professionals in Europe and the
United States there is ever growing collaboration regarding the practice and science of cognitive rehabilitation. Unfortunately, in the US, it is often difficult for clinicians to get paid for providing cognitive rehabilitation services to individuals with brain injuries. For example, Blue Cross and Blue Shield reported in 2004 that “The efficacy of cognitive rehabilitation has not been adequately demonstrated; therefore, cognitive rehabilitation does not meet the criteria for covered services.” More recently, however, an independent external review organization overturned a BlueCross BlueShield of Montana denial for cognitive rehabilitation services, requiring the company to pay for treatment after a year of denials and appeals. Not long ago, Aetna also reversed its previously restrictive policy and now states “Aetna considers cognitive rehabilitation as adjunctive treatment of cognitive deficits (e.g., attention, language, memory, reasoning, executive functions, problem solving, and visual processing) medically necessary…” as long as the deficits were acquired from a neurological event, the individual has been properly evaluated (medical and neuropsychological), and the individual is expected to make significant cognitive improvement. Such recognition of the importance of cognitive rehabilitation did not come easily and much remains to be accomplished. The practice of cognitive rehabilitation has changed substantially over the past years, to the benefit of both practicing clinicians and individuals with brain injuries. There is still much work to do, but the foundation has certainly been established. The North American Brain Injury Society extends our appreciation to Kit Malia and his author team for advancing our knowledge and understanding of cognitive rehabilitation, and gives a very special “thank you” to Dr. Keith Cicerone, a legendary pioneer in the field. Ronald Savage, EdD
pediatric brain injury symposium With to the support of Lash and Associates Publishing/Training and the Sarah Jane Brain Project, NABIS is pleased to present a unique one-day symposium on Pediatric Brain Injury on Wednesday, October 14, 2009, which will be held in conjunction with the 7th Annual Conference on Brain Injury. This symposium will present a plan for a comprehensive, integrative, accessible, culturally sensitive, long-term and child/family centered circle of care for children, adolescents and young adults with acquired brain injury. The plan was created by the Sarah Jane Brain Foundation with a panel of national experts including families and family advocacy organizations, attorneys, physicians, allied health care professionals, educators and researchers. Their goal was to recognize all of the important work that has been completed by other agencies and organizations and create a seamless, standardized, evidence-based system of care that is universally accessible for all individuals with ABI and their families regardless of where they live. The plan proposes the development of Lead Agency Centers to advocate for these individuals. These Lead Agency Centers will be guided by four over-arching goals: 1. To prevent brain injury through changes in social practices and policy. 2. To facilitate the provision of care and services to maximize the child/youth?s recovery and development after brain injury and to support the family through all stages of recovery. 3. To improve the capacity of schools and community agencies to deliver rehabilitative and educational services and support to the child/youth and family. 4. To use research to better understand the effects of neurological insults on the developing brain, to research the individual, medical and social environmental determinants of recovery and function, as well as the most effective interventions for improving child/youth and family outcomes. For more information and/or to register for this symposium and the NABIS 7th Annual Conference on Brain Injury, visit www. nabis.org.
The Sarah Jane Brain Project TM BRAIN INJURY PROFESSIONAL
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guest editor’s message
Kit Malia, MPhil, CPCRT
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I have been privileged to be involved in the field of cognitive rehabilitation as a practitioner providing day to day rehabilitation for cognitive and adjustment issues for adults with acquired brain injury for over 25 years. This was a relatively uncharted area when I started: There were few coherent approaches to rehabilitating cognitive problems (a notable exception being the work by Yehuda Ben-Yishay), and few people were particularly concerned with critically examining the evidence and going on to design improved rehabilitation approaches (a notable exception being the work of Barbara Wilson in relationship to memory issues). There is now a large body of evergrowing published data specifically looking at cognitive rehabilitation. I am in the habit of running a literature search on articles relevant to my practice in cognitive rehabilitation each quarter and these routinely run at over 120 new articles – a new article every 6 hours of my working day – and these are not all the articles being produced! Over the last several years increasing numbers of meta-reviews have been produced. All of this is good. However, quantity does not mean quality, and the results of the studies are not necessarily meaningful for the life of the individual who is struggling to deal with their altered cognitive abilities. I hear heated debates about cognitive rehabilitation from all quarters. A debate which usually focuses on a simplistic question: ‘Does it work?’ It is the intention that this issue should contribute in a positive way towards this ongoing debate. The problems facing us now are how best to make sense of all the information we have gathered, how best to produce good quality, meaningful research in the future, and how this can all be used to improve the lives of those people who have sustained an injury to their most precious and marvellous of organs – the brain. The goal of this issue is to summarise the findings from the evidence base for
cognitive rehabilitation and to examine issues related to the evidence base and best practice. The main point that we want to get across is that whilst being essential, the process of developing and implementing evidence based practice is not an easy option. There is a real danger that we all gather under the banner of ‘Evidence Based Practice’ and fall into the trap of exploring questions that are too simplistic, such as ‘Where’s the evidence?’ and as a result dismiss anything that cannot provide easy answers. In the meantime the individual who has sustained a brain injury may be receiving ineffective treatments or may be denied potentially effective treatments. The authors in this issue emphasise that a more sophisticated and intelligent approach is needed. We are very fortunate that there are a number of highly talented clinician/researchers in our field who are able to give us ideas on better ways of exploring evidence based practice, and this issue brings some of their ideas to the forefront. We are at a point in the historical development of the field of cognitive rehabilitation where there is a burgeoning recognition of the need for greater sophistication in working out best practice; this recognition is not yet embedded throughout the professionals involved in progressing and implementing this field. Hopefully this issue will go some way to addressing this. The important thing, as always, is that real people with real problems benefit in a meaningful way as a result of our attempts to ensure best practice from examination of evidence. We can all work together to achieve this. What a privilege this challenge is for all of us. I would like to thank all of the authors for their excellent contributions to this special issue, and to Ron Savage for inviting me to coordinate the content of this very topical and important area of rehabilitation. Kit Malia, MPhil, CPCRT
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. •
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A Summary of Evidence: The European Guidelines for Cognitive Rehabilitation by Stefano F. Cappa, MD Any practicing neurologist is aware that disorders of language, spatial perception, attention, memory, calculation and praxis due to acquired brain damage (in particular, stroke and traumatic brain injury) represent a major determinant of long-term disability. Given the limited impact of pharmacological treatment in most cognitive disorders, it is not surprising that an increasing attention is being given to the field of cognitive and neuropsychological rehabilitation. One of the major problems in this area is that many of the treatment procedures have been developed on a purely empirical basis, rather than on evidence derived from the neuroscience of recovery and from models of learning. An additional crucial issue, in a time of limited and controlled resources for health care, is that evidence about the effectiveness of cognitive rehabilitation is limited and often 8
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inclusive. It is thus important to collect and examine critically the available literature on the effectiveness of cognitive rehabilitation. This need was recognized by a subcommittee of the Brain Injury-Interdisciplinary Special Interest Group of the American Congress of Rehabilitation Medicine (BI-ISIG), which published the Guidelines for Cognitive Rehabilitation (Harley et al., 1992) based on expert opinions. In 2000 an evidence-based review of the scientific literature for cognitive rehabilitation was published by the same group (Cicerone et al., 2000), and an update from 1998 to 2002 has appeared recently (Cicerone et al., 2005). The Guidelines on Cognitive Rehabilitation produced by the Task Force on Cognitive Rehabilitation under the auspices of the European Federation of Neurological Societies (EFNS) (Cappa
et al., 2003; Cappa et al., 2005), which I have coordinated, represent a similar endeavor from a European perspective. Our review deals with the rehabilitation of non-progressive neuropsychological disorders due to stroke and traumatic brain damage (TBI), and does not include other relevant areas of cognitive rehabilitation, such as the non-pharmacological treatment of dementia and of psychiatric disorders, and the rehabilitation of developmental cognitive disorders. According to the general principles of evidence-based medicine, the review of the evidence is based on the assessment of the available published studies, which are rated for their quality. Several evaluation grids have been developed for this type of analysis. For our review, we adopted those recommended by the EFNS, which classifies the studies on the basis of several parameters. Randomized clinical trials are considered as the highest level of evidence (Class I), while at the other extreme (Class IV) are, for example, case reports or expert opinions. On the basis of these ratings, a recommendation is given, from A (established as effective, ineffective or harmful) to C (possibly effective, ineffective or harmful) In the case of stroke patients, the main areas of rehabilitation are aphasia, unilateral neglect, apraxia and acalculia. It is somewhat paradoxical that definitive conclusions cannot be reached in the field of rehabilitation with the longest history (speech and language therapy). The conclusions of the review by the Cochrane collaboration, which takes into account only the highest quality studies, is that there is not enough evidence to support its effectiveness. However, if lower quality studies are also considered, including rigorous quantitative single-case studies, it can be concluded that aphasia rehabilitation is probably effective. The other neuropsychological disorders typically associated with left hemispheric damage are apraxia and acalculia. Apraxia was traditionally considered to have limited impact at the functional level, because of the phenomenon of automatic-voluntary dissociation. Recent evidence, coming from good quality studies, suggests that the presence of apraxia is associated with worse long-term prognosis for functional recovery, and that treatment with compensatory strategies, focusing on functional activities of daily life, has a positive effect. Rehabilitation of acalculia is more at the experimental stage, and is based on a series of single case studies which have been conducted in the cognitive neuropsychology framework to treat selected variants of acalculia, which were in general successful. Notably, significant improvements were observed even in severely impaired and chronic patients. Many methods of rehabilitation have been applied to unilateral neglect, a typical consequence of right hemispheric damage. The available evidence, coming from a number of high quality studies, is that rehabilitation is effective in reducing neglect symptoms. What is still in need of further investigation is whether the improvement has an impact at the functional level. In the case of other neurological disorders, in particular traumatic brain injury (TBI), the crucial areas for cognitive rehabilitation are attention, and memory. Specific interventions for attention during the acute stage are not recommended, because the available evidence does not allow clinicians to distinguish the effects of specific attention training from spontaneous recovery. On the other hand, there is considerable evidence from good quality studies suggesting that attention training in
the post-acute phase after TBI is effective. In the case of memory disorders, the use of memory strategies without electronic aid are rated as possibly effective. Specific learning strategies such as errorless learning are probably effective. There is evidence for possible efficacy of non-electronic external memory aids, such as diary or notebook keeping. Electronic external memory devices such as computers, paging systems or portable voice organizers are probably effective aids for improving TBI or stroke patients’ everyday activities. Finally, there is evidence that memory training in virtual environments is rated as possibly effective. I would like to conclude by underlining several important methodological problems in this area. I believe that the question of the efficacy of cognitive rehabilitation “in general” is misleading for a number of reasons. In the first place, the heterogeneity in the clinical features that characterize the clinical syndromes is enormous (think, for example, about the different production of a Broca’s and a Wernicke’s aphasia). It is thus probably impossible to evaluate the effectiveness of a single treatment for aphasia or amnesia. This is a problem, because the standardization of treatment is one of the requirements for a large, controlled clinical trial. Given the additional requirements for randomization and a large sample size, a careful definition of the target population is mandatory. In the case of behavioral interventions, factors such as treatment dosage are clearly more difficult to standardize than in the case of pharmacological trials. The role of interpersonal relationship, which is a key aspect of cognitive rehabilitation, is also difficult, or impossible, to take into account. Finally, the use of a placebo treatment is generally not feasible, and double-blindness cannot be achieved. As mentioned at the beginning, the guidelines are far from being comprehensive, as they do not cover clinically relevant areas, such as executive function and awareness, and do not consider well-established approaches, such as holistic neuropsychological rehabilitation. An update is clearly needed, and is planned for the next year. I am fully convinced that a harmonization of European and US guidelines would represent an important advancement in this area, and increase the impact of neuropsychological rehabilitation on the planning and provision of health care services worldwide. REFERENCES 1.
2.
3. 4.
5.
Cappa SF, Benke T, Clarke S, et al., European Federation of Neurological Societies.EFNS Guidelines on Cognitive Rehabilitation: Report of an EFNS task force. Eur J Neurol. Jan;10(1):11-23, 2003. Cappa SF, Benke T, Clarke S, et al., Task Force on Cognitive Rehabilitation. EFNS guidelines on cognitive rehabilitation: report of an EFNS task force. Eur J Neurol. 12:665-80, 2005. Cicerone KD, Dahlberg C, Kalmar K, et al., Evidence-based cognitive rehabilitation: Recommendations for clinical practice. Arch Phys Med Rehab. 81: 1596-1615, 2000. Cicerone KD, Dahlberg C, Malec JF, et al.. Evidence-based cognitive rehabilitation: updated review of the literature from 1998 through 2002. Arch Phys Med Rehabil. 86:1681-92, 2005. Harley JP, Allen C, Braciszeski TL, et al., Guidelines for cognitive rehabilitation. NeuroRehabilitation. 2:62-6713, 1992.
About the Author
Stefano F. Cappa is a neurologist and cognitive neuroscientist. His present position is Professor of Neuropsychology at the Vita Salute S. Raffaele University in Milano, Italy and Director of the Division of Cognitive Neurology of San Raffaele Turro Hospital. His main research interests are cognitive neuroimaging, dementia and cognitive rehabilitation. BRAIN INJURY PROFESSIONAL
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Evidence-BaseD Practice: Reminders and Updates for Clinicians who Treat Cognitive-Communication Disorders after Brain Injury by McKay Moore Sohlberg, PhD, Mary R.T. Kennedy, PhD
Take a moment and think about a client with a neurologic cognitive or communication disorder that you are actively treating. Make a mental note about the type of intervention that you are implementing, how the treatment plan has evolved, and the associated outcome measures you are taking. It is likely that the decisions that went into selecting and shaping that intervention were systematic and rational. There were compelling reasons that led you to implement this intervention with this person at this time. Chances are that you did not select it because you followed a creative hunch. You also probably did not base it solely on the results of a research study empirically evaluating that exact treatment on subjects identical to your client. Your clinical decisions were probably influenced by existing empirical and theoretical studies related to the area, your own clinical experience, and perhaps most importantly, your client’s response to your intervention. Each of these considerations is necessary, and none can fly solo. If you are bothering to read this journal article, you are engaging in the evidence based practice (EBP) movement that has advanced our field and helped today’s clinicians evolve into 10 BRAIN INJURY PROFESSIONAL
scientific practitioners. Fortunately, we have moved beyond the stage of having to convince, and in some cases, admonish, clinicians to follow principles of scientific clinical decision making. There is consensus that delivering systematic treatment anchored in the available evidence will increase our accountability and ultimately lead to improved client outcomes. On the research side of the equation, we have realized that there are a number of different research paradigms that inform our practice and that what constitutes “empirical research” as applied to treatment is not formulaic. This article has a dual purpose. First, we hope to provide a useful review of the key concepts important to implementing EBP. Second, we offer an update of available evidence or practice guidelines specific to cognitive-behavioral rehabilitation for people with acquired cognitive impairments.
Key Evidence Based Practice Concepts Most every article on EBP encourages “use of the best available empirical evidence”. At first glance, this mandate seems clear
and straightforward. However, the waters quickly become muddied when one attempts to obtain consensus on such questions as what constitutes empirical evidence, how many and what type of articles are considered adequate validation of a treatment and how should we respond if there are mixed findings in the research (Justice, 2008). Engaging in EBP requires consideration of the empirical evidence with a recognition that it will require integrating information from a number of sources.
out with the heterogeneous clinical populations that are on the caseloads of medical speech and language pathologists, and thus are not readily available. Second, they place disproportionate emphasis on the tools of the experimental design rather than the specific questions that need to be answered (Montgomery & Turkstra, 2003). Evaluations and recommendations for clinical practice should not be based only on the amount of controlled experimental evidence, but also on consideration of the whole clinical context including generalizability of the Use of Empirical Evidence treatment, cost effectiveness and client values and preference. We begin with a reminder of the different types of empirical Recognizing that our clients and/or our treatment contexts evidence that are available for consideration followed by an ac- may differ from those evaluated in controlled trials (if clinical tion plan for accessing and using this information. Empirical trials are available), we acknowledge the utility of other types evidence is found in our research base and ideally includes stud- of research evidence including single subject designs and case ies of the intervention being considered with the client popula- descriptions. These may help us answer our driving question, tion of interest. When such studies have not been conducted is there persuasive evidence to try this intervention for this clion the target population, consideration of intervention studies ent in this circumstance? (Ylvisaker et. al 2002). These designs from closely related clinical populations may be helpful (Ylvi- may provide more in depth descriptions and relevant evidence saker et. al, 2002). For example, in the area of executive func- about a client or series of clients that resemble our target client tion intervention for people with traumatic brain injury, the and treatment. Certainly we must be careful in interpreting this total number of subjects across studies is relatively low (Ken- evidence widely since inferring from a single or a few cases to a nedy et al., 2008). It may be fruitful to additionally examine larger population is not valid. However, the point is to undercross population studies of groups known to score the value of considering evidence have executive function impairments such as It is important to recognize that EBP from single case studies in the larger picindividuals with schizophrenia or high level requires more than a review of the ture when making clinical decisions. autism. Prefiltered evidence can be an efficient relevant empirical evidence. ConsidIf a clinical case presents a unique set of method for a clinician to summarize the factors and/or the particular clinical need and eration of the treatment context is research evidence in an area of interest. context have not been researched, it is often essential for knowing whether or how Systematic reviews and meta-analyses helpful to evaluate theoretical knowledge. to incorporate research information. that examine and summarize the research Studies that provide a theoretical rationale evidence across a body of articles are for a particular approach to treatment can inform intervention available in many areas of neurogenic communication disorwhen there is a lack of available empirical studies. Clinicians ders. Practice guidelines summarize a body of literature and may draw inferences on what therapy practice might be expect- then provide recommendations for clinicians based on the cured to help a client based on what is known about a particular rent best evidence. Becoming familiar with sources for pre-filarea. For example, understanding motor learning theory may tered evidence is a critical evidence-based practice requirement. be very useful in guiding intervention for a unique dysarthria For example, the National Center for Evidence-Based Practice profile. Hence, evidence supporting or refuting a particular ap- in Communication Disorders (N-CEP) of ASHA provides a proach may be found in different types of research articles. listing of published reviews and practice guidelines relevant to The strength of empirical evidence is often categorized clinicians that is organized by disorder and topic areas (www. by the rigor of the research design evaluating a particular in- asha.org). Searching the literature using the search terms “Practervention technique. The American Academy of Neurology tice Guidelines� may reveal key information. The second half (www.aan.com) describes four classes of evidence. Random- of this article summarizes the practice guidelines papers in the ized controlled trials take the highest position in the hierarchy area of brain injury rehabilitation. identified as Class I studies and evidence from uncontrolled Ultimately, you will generate the most important empirical studies, expert opinion or case reports occupy the bottom as data by the performance data you collect on your client. DiClass 4 studies. AAN provides interpretive language for how agnostic therapy or patient-specific hypothesis testing (PSHT) the evidence should be translated to clinical recommendations has been touted as the core of scientific clinical decision mak(e.g., review of research suggests that the intervention should ing for complex cases (Ylvisaker & Feeney, 1998). Conducting be done, should be considered, may be considered, or the data are therapy and systematically measuring potential treatment efinsufficient). This is a very helpful approach when the inter- fects may be the strongest type of evidence for a treatment since vention and clinical population are sufficiently straightforward it will be customized to the individual of interest (Ylvisaker et to have been adequately studied using controlled experiments. al., 2002). The concept is that the clinician sets up the therapy However, often this is not the case, and there are not sufficient to test the hypothesis that the intervention is responsible for numbers of controlled trials. Further, the complexity of the any observed changes. The use of control data can be very helppopulation or intervention may suggest other types of research ful for testing the hypothesis; that is, measuring performance evaluation would be more illuminating. on tasks or activities that you would and would not expect to There are several dangers inherent in limiting evidence to change as a result of the intervention may be helpful in demonClass I studies. One, they are expensive and difficult to carry strating a relationship between the therapy and outcomes. The BRAIN INJURY PROFESSIONAL
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most important element when conducting PSHT is to set up careful measurements that are meaningful and objective.
Action plan for obtaining and using empirical evidence We have established the importance of considering different types of research studies as evidence directing intervention decisions. An action plan for obtaining and effectively using empirical evidence includes the following four steps (Lemencello & Fanning, 2008): 1. Define your clinical information need and develop a searchable question. a. Are you wondering if a particular approach is effective or are you interested in identifying a reliable method to measure outcomes of an intervention? You want to clarify your knowledge gap so your literature search will be more relevant. 2. Search the literature using a logical hierarchy. a. Prerequisite skills include familiarization with databases that have the journals that publish in your area as well as knowledge of the professional associations and websites promoting EBP. b. Begin by searching for prefiltered evidence from peer reviewed journals. If practice guidelines or systematic reviews are not available, look for individual articles on your topic of interest in peer reviewed journals using research designs with experimental controls. If this level of empirical evidence is not available, consider searching for cross population studies or theoretical evaluations that examine the rationale for why you might use an approach, or single case descriptions. The more searches you conduct, the faster you become. 3. Analyze and integrate the evidence into your practice. a. As you review your data, be a critical consumer and ask the five PROBE questions (www.asha.org): i. Population-Is the information relevant to your patient population and circumstance? ii. Results-Do you believe the results? Are the outcomes positive and what aspects do YOU think are responsible for the reported outcomes. iii. Objectivity & Bias-Any drawbacks, bias or limitations to the recommendations? iv. Evidence-Is there scientific evidence to support what the report claims? 4. Conduct therapy systematically with adequate measurement to determine whether your intervention is responsible for change. a. Regardless of the available evidence, each patient provides data regarding the efficacy of that intervention. The use of Patient Specific Hypothesis Testing and documentation of interventions and outcomes can build a data bank relevant to a clinician’s own caseload and experience
Incorporating Evidence with Key Considerations in the Treatment Context Finding time to learn the procedures and identify the resources necessary to obtain and analyze empirical evidence relevant to 12 BRAIN INJURY PROFESSIONAL
a treatment question is often the largest challenge for practicing clinicians. We hope that the preceding section and the review of current practice guidelines presented in the latter part of this paper helps reduce the challenge. It is important to recognize that EBP requires more than a review of the relevant empirical evidence. Consideration of the treatment context is essential for knowing whether or how to incorporate research information. Typically, this part of EBP is completed with ease by clinicians. Considerations critical for EBP include those related to the individual client and the context. The client’s values and priorities will be a key consideration in selecting an intervention. Even if the literature provides definitive evidence that an approach works to ameliorate a specific impairment, if the client does not perceive value in alleviating that impairment, it would not be a treatment priority. Important contextual variables include the relative costs (financial, client and clinician time, caregiver burden, logistical constraints) that might determine whether a particular treatment is an appropriate fit. These considerations can be incorporated by ensuring that assessments include a thorough description of contextual and motivational variables, in addition to evaluation of the nature and impact of an impairment. In summary, responsible scientific decision making depends upon collecting and making inferences from a variety of client and contextual considerations that will vary in weight depending upon the nature of the clinical situation and the availability of empirical evidence (Ylvisaker et al., 2002). In the remainder of the article, we attempt to jump start the search for empirical evidence relating to the treatment of cognitive-communicative impairments resulting from traumatic brain injury. The review provides both an example of the process of developing prefiltered evidence, specifically practice recommendations (standards, guidelines and options), as well as provides those clinicians who have clinical questions in these areas, an actual evidence resource.
Systematic Reviews and Clinical Recommendations for Managing Cognitive and Communication Disorders in Persons with Traumatic Brain Injury The Academy of Neurologic Communication Disorders and Sciences (ANCDS) embarked on a large project in 1997 to identify, describe, review and critique the evidence for evaluating and treating neurologically-based communication disorders (www.ancds.org; Golper et al., 2001). Committees of expert researchers and clinicians were formed for the purposes of: “conducting systematic and exhaustive literature reviews that are inclusive and balanced; assessing levels of evidence against agreed-on objective criteria; and, crafting guidelines based wholly on the reviews and assessments of levels of scientific evidence” (Frattali, 2003, p. x). The writing subcommittee for Evidence-based Practice of Cognitive and Communication Disorders after Traumatic Brain Injury (TBI) was established in 2001 by seven national experts. The first task was to agree upon principles that would guide decision making (e.g., inclusion and exclusion criteria), eliminate bias and provide transparency to the process of systematically reviewing assessment and intervention literature (Kennedy et al., 2002). These principles were:
world cognitive and language based behavior, emphasizing instead the use of informal and hypothesis-driven assessment that considers personal factors (e.g., personal values, varying levels • of fatigue) and the environment/context in which the behavior occurs (see also Coelho, Turkstra & Ylvisaker, 2005). • Two systematic reviews and clinical recommendations were • conducted by Sohlberg et al., (2003, 2007). The effects of directly training specific attention processes was reviewed by examining 13 group designed studies (Sohlberg et al., 2003). Practice guidelines were recommended for the use of attention • training with adults who were able to sustain their attention during most activities and who were at stable points in their recovery. The research suggests that attention training should • use exercises tailored to the individual client’s attention profile and should be administered at least weekly in combination with metacognitive training in order to achieve improvement on tests of attention impairment and client/caregiver reports of • functional attention changes. There is suggestion that explicit instruction or use of generalization exercises is necessary to achieve transfer to untrained tasks or environments, although • this is not sufficiently explored in the literature. With considerations and conditions, attention training should be considered as a practice guideline if part of a comprehensive cognitive reha• bilitation program. To investigate the effectiveness of compensatory memory • aids, Sohlberg et al., (2007) critiqued 21 studies in which 7 different kinds of memory aids were used by individuals with brain injury. Memory notebooks or planners were used in most of the studies, Thus, these reviews differed from MSI was more effective than control although a few investigated the use of other published reviews by includtherapy at improving problem solving technology. Outcomes were uniformly ing: studies with children and adults; studies searched using non-medical outcomes that were functional, contextu- positive for individuals with chronically databases (e.g., ERIC); studies that en- alized activities. This fairly strong evidence impaired memory; that is, performance compassed all design types (e.g., case resulted in the recommendation that MSI in tasks that required remembering was reports); and when little evidence ex- should be an integral part of therapeutic more likely when the aid was used as a reists, including expert opinion and con- instruction when training adults with TBI to minder or prompt. Even though the descriptions of how individuals were trained sidering evidence from other similar solve functional problems. to use the aids were vague and opaque, clinical populations. Additionally, these reviews included detailed tables of evidence that identified the the positive outcomes resulted in recommending that memory critical features (the sample population, types and dosage of aids should be considered a practice guideline for people with intervention, types of outcomes) of the studies reviewed. To acquired memory impairments. Behavioral disorders in children and adults can result in sodate, five reviews of different areas of intervention (direct attention training, use of external memory aids, intervention for cial isolation, academic or job failure and heavy family burden. behavioral problems, intervention for executive functions, use Ylvisaker et al., (2007) reviewed 65 studies that investigated of instructional techniques) and a review of standardized assess- the effects of behavioral interventions. Using the principles identified earlier to guide inclusion and exclusion criteria, the ment have been published. Turkstra et al., (2005) reviewed the psychometric proper- authors concluded that the outcomes of behavioral interventies of 69 standardized cognitive and communication tests, tion, although varied, were favorable: “Behavior problems after reviewed the published literature, surveyed speech-language TBI in both children and adults should be considered a practice pathologists (SLPs) and publishers about test use, and sum- guideline at both acute and post-acute stages of recovery” (p. marized expert opinion. Several tests had strong content and 782). However, the kind of intervention used, the use of conface validity, whereas many were found to be weak in reliability tingency management procedures or positive behavioral inter(getting the same results with repeated testing) and few provid- ventions and support was left more open ended for clinicians to ed ecological validity outside of the clinical environment (i.e., consider because of some methodological concerns in this body the real world). Indeed, the vast majority of tests were aimed of literature. These included inconsistent reporting of reliabilat identifying impairments rather than activity limitations or ity, validity, generalization or transfer of outcome measures. In 2008, two systematic reviews and recommendations societal restrictions. The authors cautioned clinicians about using impairment tests that may or may not be indicative of real- were published. Kennedy et al., (2008) reviewed 15 studies of •
individuals who sustain TBI are as unique as the injury itself; TBI occurs to persons of all ages, ethnic and racial backgrounds; there is a range of TBI severity, from mild to severe; management of cognitive and communication disorders is interdisciplinary, although neuropsychologists and speechlanguage pathologists are uniquely trained with knowledge and skills in managing this clinical population; there are numerous management approaches that use various service delivery models, such as medical rehabilitation, educational, etc.; improvement should be documented in real-life, functional activities and societal participation outcomes, and not solely on standardized, impairment-based test scores (World Health Organization, 2001); all studies that provide empirical, quantitative data will be considered, including non-randomized group studies, single subject designs and case reports; intervention research literature has been historically organized by types of cognitive and communication impairments and disabilities; consider evidence from other similar clinical populations when little evidence exists for individuals with TBI; And tables of evidence allow readers to see how and why clinical recommendations are reached and in doing so, provide methodological transparency.
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intervention for executive functions, more specifically problem solving. Two-hundred and sixty-six individuals participated in intervention studies that represented a variety of experimental designs, including randomized-controlled clinical trials. Treatment effects were statistically estimated from group studies including several that had used metacognitive strategy instruction (MSI) in the experimental intervention and all treatment effects, including other kinds of intervention were generally positive. A meta-analysis was conducted to determine if MSI intervention was more effective than the “control therapy” at improving problem solving impairments and functional activity limitations. MSI and the control therapy were equally as efficacious at improving problem solving outcomes measured as decontextualized impairments; however, MSI was more effective than control therapy at improving problem solving outcomes that were functional, contextualized activities. This fairly strong evidence resulted in the recommendation that MSI should be an integral part of therapeutic instruction when training adults with TBI to solve functional problems. Instructional techniques are the training or teaching practices used by clinicians in the rehabilitation in individuals with brain injury. Ehlhardt et al., (2008) identified 51 studies that included individuals with acquired brain injury (38), dementia (7), and schizophrenia/schizoaffective disorder (6). Two kinds of instruction practice were identified: systematic instruction such as spaced retrieval or method of vanishing cues; and conventional instruction such as trial and error learning. Generally, the evidence was favorable for the use of systematic instruction in facilitating learning. This review suggested the following key instructional practices that promote learning in individuals with memory impairment: use of task analyses for teaching multi-step procedures, errorless instruction during initial acquisition, sufficient practice, distributed practice and facilitation of effortful, active processing through strategy use. Other experts have also reviewed the rehabilitation literature on managing cognitive and communication disorders in adults with acquired brain injury (e.g., Cicerone, 2001, 2005) and children with acquired brain injury (Laatsch et al., 2007), but these reviews differ from the ANCDS reviews in many of the ways discussed on page 12. For example, Cicerone and colleagues reviewed the rehabilitation literature broadly for adults only and did not include tables of evidence; Laatsch and colleagues took a similar approach, reviewing only the research literature on children. Reviews of intervention for other cognitive and/or communication disorders such as dysarthria, apraxia of speech, dementia and aphasia have been conducted by other ANCDS committees. All of these documents, including the ones summarized in this article are available at www.ancds.org, by clicking on Practice Guidelines.
Summary EBP or scientific clinical decision making is the responsibility of all clinicians. As described in the first part of this paper, it requires clinicians to consider the available empirical evidence in tandem with relevant contextual and client variables. Familiarization with electronic search techniques, awareness of the pertinent clinical considerations and careful measurement of specific client outcomes are foundational to EBP. The use of prefiltered evidence including existing practice guidelines facilitates EBP. This paper summarizes the ANCDS guidelines papers for treat14 BRAIN INJURY PROFESSIONAL
ing cognitive-communication disorders after brain injury in order to provide an example and a resource for applying empirical evidence to clinical decision making. It is a shared vision of all clinicians to implement systematic treatment anchored in the available evidence with the ultimate goal of improved client outcomes. It is hoped this paper will encourage actualization of that vision. References
1. Ehlhardt, L., Sohlberg, M. M., Kennedy, et al., Evidence-based Practice Guidelines for Instructing Individuals with Acquired Memory Impairments: What Have We Learned in the Past 20 Years? Neuropsychological Rehabilitation. 18, 300-342, 2008. 2. Golper, L., Wertz, R. T., Frattali, et al., Evidence-based practice guidelines for the management of communication disorders in neurologically impaired individuals: Project Introduction. Academy of Neurologic Communication Disorders and Sciences (ANCDS). www.ancds. org/PracticeGuidelines 2001. 3. Kennedy, M. R., Avery, J., Coelho, C., et al., Evidence-based practice guidelines for cognitive-communication disorders after traumatic brain injury: Initial committee report. Journal of Medical Speech-Language Pathology. 10(2), ix-xiii, 2002. 4. Kennedy, M., Coelho, C., Turkstra, L., et al., Intervention for executive functions after traumatic brain injury: A systematic review, meta-analysis and clinical recommendations. Neuropsychological Rehabilitation. 18(3), 257-299, 2008. 5. Justice, L. Evidence-based terminology, Letter from the editor, American Journal of SpeechLanguage Pathology. 17, 324, 2008. 6. Lemoncello, R. & Fanning, J. Becoming an evidence-based practitioner. Workshop presented at the Oregon Speech Language Hearing Convention (OSHA), Salem, Oregon. October, 2008. 7. Montgomery, E.B. & Turkstra, L. Evidence-based medicine: Let’s be reasonable. Journal of Medical Speech-Language Pathology. 11(2), ix-xii, 2003. 8. Kennedy, M. R. T., Coelho, C., Turkstra, L., et al., Intervention for executive functions after traumatic brain injury: A systematic review, meta-analysis and clinical recommendations. Neuropsychological Rehabilitation. 18, 257-299, 2008. 9. Sohlberg, M., Avery, J., Kennedy, et al., Practice guidelines for direct attention training. Journal of Medical Speech-Language Pathology. 11, 3, xix-xxxix, 2003. 10. Sohlberg, M. M., Kennedy, M. R. T., Avery, J., et al., Evidence based practice for the use of external aids as a memory rehabilitation technique. Journal of Medical Speech Pathology. 15(1), xv-li, 2007. 11. Turkstra, L., Ylvisaker, M., Coelho, C., et al., Practice guidelines for standardized assessment for persons with traumatic brain injury. Journal of Medical Speech-Language Patholog. 13(2), ix-xxxviii, 2005. 12. World Health Organization ICF: International classification of functioning, disability,and health. Geneva, Switzerland: WHO, 2001. 13. Ylvisaker, M., Turkstra, L., Coelho, C., et al., Behavioral interventions for individuals with behavior disorders after traumatic brain injury: A systematic review. Brain Injury. 21(8), 769-805, 2007. 14. Ylvisaker, M., Coelho, C., Kennedy, M., et al., Reflections on evidence-based practice and rational clinical decision making, Journal of Medical Speech-Language Pathology. 10(3), xxvxxxiii, 2002. 15. Ylvisaker, M. & Feeney, T. Collaborative brain injury intervention: Positive everyday routines. San Diego: Singular Publishing Group, 1998.
About the Authors
McKay Moore Sohlberg, PhD, is an Associate Professor at the University of Oregon where she directs the master’s and PhD training programs in Communication Disorders and Sciences. She is widely known for her pioneering work in the field of cognitive rehabilitation. Her research focuses on the development and evaluation of methods to manage acquired deficits in attention, memory, and executive functions. She is supported by a number of federal grants to develop and evaluate assistive technology for individuals with cognitive impairment. Dr. Sohlberg has been active at the national level in the development of evidence based practice guidelines for cognitive rehabilitation. Mary Kennedy, PhD, is an Associate Professor in the Speech-LanguageHearing Science Department at the University of Minnesota, Twin Cities. She has over 25 years of clinical and research experience working with individuals with cognitive and communication disorders as a result of brain injury. Her current interests are in facilitating academic success in college students with brain injury. Dr. Kennedy has published and presented widely on these topics and has chaired the Academy of Neurological Communication Disorders & Sciences (ANCDS) committee that develops practice guidelines on managing cognitive disorders in individuals with traumatic brain injury.
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Developing and understanding an evidence base in rehabilitation By E Diane Playford, MD In March 2004, the Academy of Medical Sciences produced the report ‘Restoring neurological function: putting the neurosciences to work in neurorehabilitation’ (Academy of Medical Sciences, 2004). The main thrust of this document was that in the last two decades there has been remarkable progress in neuroscience, transforming our understanding of the extent to which functional recovery is possible following neural damage and how it may be promoted. There have been advances on several fronts, which are set out in the ‘evidence’ to this Report. They include: • new methodologies in clinical trial design, measurement of outcome, and research synthesis; • appreciation of the role of activity and environmental input in driving neuroplasticity in healthy and injured brains; • new investigations such as neuro-imaging, electro- and magneto-encephalography and transcranial magnetic stimulation; • better understanding of brain-behavior relationships through cognitive neuroscience and the role of factors such as attention, motivation, mood and goal setting in neurorehabilitation; • new treatment modalities such as transcranial magnetic stimulation, neural transplantation, neuroprotective agents and gene therapy. The report stated that a new clinical science of restorative neurology could develop provided there is closer integration of basic and clinical research agendas. Currently neuroscientists and clinician scientists are often unaware of each other’s work; and this prevents advances in neuroscience being translated into 16 BRAIN INJURY PROFESSIONAL
more effective neurorehabilitation treatments. So, five years on, what progress has been made? Unfortunately, not much. Day-to-day practice in rehabilitation has changed little. Clinicians value the personal relationship they have with their clients and do their best to tailor treatment regimes to individual needs. Clients are reviewed regularly and conscientiously, effective strategies reinforced, ineffective ones modified or abandoned. At teaching and training days, the relevant literature of the day is reviewed, and the lack of evidence bemoaned. Cochrane reviews on rehabilitation interventions typically end with a statement along the lines ‘only (insert number of less than five) RCT were identified. These were methodologically poor, limited by small numbers, heterogeneous groups, inadequate blinding and inconsistent use of outcomes measures. More studies are needed in the following areas. Lack of evidence does not mean lack of efficacy’. In research laboratories around the world, scientists continue to study small groups of (usually young and fit) patients and report potential for their interventions to make a difference. In the laboratory small tightly controlled studies on homogeneous groups demonstrate changes. In the laboratory there is evidence that upper limb recovery may be helped by sensory stimulation, by constraint induced movement therapy, by repetitive practice using robotics, with Functional Electrical Stimulation. In the laboratory there is evidence that neglect may benefit from behavioral strategies, specialized devices such as prisms, and pharmacological manipulations. There are many such examples. Few have made the leap into routine clinical practice, and scientists regret the fact that patients seem difficult to recruit in practice,
putting enormous effort into locating individuals who meet the selection criteria who may represent a fraction of those with the problem on rehabilitation units. Why hasn’t the progress made in the laboratory translated into clinical practice? Some of this may be attributed to practical problems. Research laboratories are rarely co-located with clinical facilities. A time consuming research protocol can impact on delivery of therapy, not only for that individual but for others. Research of this type often has time implications for already busy portering, nursing and therapy staff. But there may also be more subtle difficulties. Take the example of hemi-spatial neglect. This is a heterogeneous syndrome comprised of dissociable cognitive deficits. A battery of tests is essential to evaluate the precise deficits manifest in individual patients. Lesion anatomy is important in predicting the pattern of impairments likely in patients, as well as informing the choice of rehabilitative strategy. Many clinicians may worry that they have neither the time nor the skill set to identify the precise deficits, and then select a rehabilitative strategy. This issue needs to be addressed. Rehabilitation services need to be developing research based treatment protocols that ensure detailed assessment of deficits, and then specify an intervention, and how it should be delivered. This may be perceived as running counter to rehabilitation practice which tailors interventions to the individual, but within the protocol there should be scope for modifications. For example, the research protocols used in constraint induced movement therapy do not, in my experience, work in practice. People find adhering to the protocol emotionally and physically draining and typically ‘cheat’. The period of constraint, and the type of constraint gets modified. This reflects how constraint will work in real life. Such deviations from protocol, and their reasons should be recorded, leading to modifications of the protocol, until a real-life protocol can be developed. This can then be evaluated. Evaluation also poses real challenges. The Cochrane Library is widely cited as a source of robust systematic reviews and research syntheses which draw together the evidence available from randomized controlled clinical trials (RCTs), tested further by meta-analysis. Although there is a reasonably strong evidence base for the effectiveness of brain injury rehabilitation using this methodology, it is increasingly recognised that RCTs cannot be applied to address all the questions that need to be answered (Turner-Stokes, 2008). There are well recognised limitations of RCTs including the fact that the intervention setting may not reflect the real-world clinical environment, that selection criteria are often restrictive limiting the generalizability of the findings, the difficulties of blinding particularly when dealing with therapy interventions, and cost. As such many RCTs have not addressed the issue of the evaluation of complex interventions. The Medical Research Council (MRC) guidance ‘A framework for the development and evaluation of complex interventions designed to improve health’ published in 2000 defined complex interventions as those which comprise a number of separate elements which seem essential to the proper functioning of the intervention although the “active ingredient’’ of the intervention that is effective is difficult to specify (MRC, 2000). The elements that make an intervention complex are the number of interacting components within the experimental and control interventions, the number and difficulty of behaviors required by those delivering or receiving the intervention, the number of groups or organizational levels targeted by the intervention, the number and variability of outcomes and the degree of flexibility or tailoring of the intervention permitted. The MRC guidance suggested that five phases were necessary to evaluate interven-
tions (1) ‘Pre-Clinical’ or theoretical (2) Phase I or modeling (3) Phase II or exploratory trial (4) Phase III or main trial (5) Phase IV or long term surveillance. The importance of qualitative as well as quantitative approaches are emphasized particularly in the modeling phases. More recently the steps identified in this guidance have been updated, and four key elements of the development and evaluation process identified as development, feasibility/piloting, evaluation and implementation (Craig et al., 2008a; Craig et al., 2008b). These elements are conceptualized in such a way that although a logical development, pilot study, evaluation, implementation route is seen as ideal, the process may be iterative. The new guidance highlights different approaches to evaluation and while a randomized control trial is still seen as ideal, a number of experimental designs are considered including cluster randomized trials, stepped wedge designs, preference trials and randomized consent designs, and Nof 1 designs. In the USA, Horn, de Jong and colleagues have argued that it is not ‘evidence-based practice’ we need now, but ‘practicebased evidence’ in rehabilitation (Horn and Gassaway, 2007). In contrast a practice based evidence approach requires a direct acknowledgement of the context in which individuals and teams work. It gives a voice to practitioners and service users, recognizing that they have first hand knowledge and experience of what works, what needs to change, and how it may change. Thus, we need to consider a clinical improvement approach that comes from the the systematic collection of prospective data which provides information about what works for which patients in real-life clinical practice (Horn and Gassaway, 2007; Horn et al., 2005). This practice based evidence is a type of observational study design with seven significant features: 1. All interventions are considered to determine the relative contribution of each; 2. Hypotheses are general; 3. Minimal patient selection criteria maximize generalizability and external validity; 4. Detailed characterization of patients through use of robust measures of severity of illness and functional status; 5. Patient differences are controlled statistically rather than through randomization; 6. Facility and clinical buy-in obtained through use of transdisciplinary Clinical Practice Team; and 7. High level of transparency for all stakeholders. In many ways an observational study of this type equates to Phase IV of the MRC framework when the broader applicability of an intervention outside of a research context is tested to establish the long-term and real-life effectiveness of the intervention. An example of the type of finding that comes from this approach is highlighted by Horn and Colleagues’ Post-Stroke Rehabilitation Outcomes Project that evaluated associations among stroke rehabilitation patients, processes, and outcomes, demonstrating that early high intensity rehabilitation had better outcome (Horn et al., 2005). Studies of this type would not be admissible using the Cochrane methodology, but their methods have been developed for assimilating published literature to include a broader range of ‘evidence’. These encompass other research designs, qualitative studies and different techniques which allow the evaluation of individual experience in addition to controlled experimental data. One such method is the research typology that was developed for the UK National Service Framework (NSF) for Long Term Neurological Conditions and used to evaluate the evidence base that was assembled to underpin the NSF standards (The Department BRAIN INJURY PROFESSIONAL
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of Health, 2005). This evidence then needs grading so that the strength of any recommendation can be identified. There are many different ways of grading evidence and the strength of recommendations, and a recent drive to establish a common system has been proposed by the GRADE Working Group (Grading of Recommendations Assessment, Development and Evaluation) (Atkins et al., 2004; Guyatt et al., 2008). The GRADE system offers two grades of recommendation based on the balance between desirable and undesirable effects of an intervention. Comparing Cochrane methodology and the NSF typology followed by the GRADE system Turner-Stokes recently summarised the published evidence for the effectiveness of rehabilitation following acquired brain injury in adults of working age (Turner-Stokes, 2008). The trial-based studies provided ‘strong evidence’ that more intensive programs are associated with earlier functional gains, and ‘moderate evidence’ that continued outpatient therapy can help to sustain gains made in early post-acute rehabilitation. However, they failed to address the impact of early or late rehabilitation, the effect of specialist programs (e.g. vocational or neurobehavioral rehabilitation), or cost effectiveness. In contrast, the non-trial-based studies provided strong evidence in all these areas, as well as evidence for the cost-benefits of rehabilitation. These non-trial based studies are predominantly derived from cohort analyses, and so represent the systematic collection of over 6,600 cases treated under ‘real life’ conditions. Clinicians need to acknowledge the depth and breadth of evidence that has already been collected from rehabilitation services supporting rehabilitation interventions for brain injury. In the future, we need to develop the evidence base further. First steps would include developing protocols for detailing interventions more accurately, and developing modular treatments that can be incorporated into existing practice. References 1. 2.
3.
4. 5.
6. 7.
8. 9. 10.
Academy of Medical Sciences. Restoring Neurological Function: Putting the neurosciences to work in neurorehabilitation: A report from the Academy of Medical Sciences. March 2004. Atkins D, Eccles M, Flottorp S et al., Systems for grading the quality of evidence and the strength of recommendations I: Critical appraisal of existing approaches The GRADE Working Group. BMC Health Serv Res.22(1):38, 2004 Craig P, Dieppe P, Macintyre S, et al., Medical Research Council Guidance. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. Sep 29;337:a1655, 2008. Craig P, Dieppe P, Macintyre S, et al., Developing and Evaluating complex interventions: new Guidance MRC www.mrc.ac.uk/complexinterventionsguidance 2008. Guyatt GH, Oxman AD, Vist GE, et al. Rating quality of evidence and strength of recommendations: GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 336:924-926, 2008. Horn SD, Gassaway J. Practice-based evidence study design for comparative effectiveness research. Med Care. 45(10 Suppl 2):S50-7, 2007. Horn SD, DeJong G, Smout R, et al. Stroke rehabilitation patients, practice, and outcomes: Is earlier and more aggressive therapy better? Arch Phys Med Rehabil. 86(12 Suppl 2):S101–S114, 2005. Medical Research Council. A Framework for Development and Evaluation of Randomised Control Trials for Complex Interventions to Improve Health. 2000. The Department of Health. The National Service Framework for Long Term Conditions. 2005. Turner-Stokes L. Evidence for the effectiveness of multi-disciplinary rehabilitation following acquired brain injury: a synthesis of two systematic approaches. J Rehabil Med. Oct;40(9):691-701, 2008.
About the Author
Diane Playford is Senior Lecturer at the Institute of Neurology, UCL and honorary Consultant Neurologist at the national Hospital for Neurology and Neurosurgery, UCLH trust, Queen Square, London, where she is responsible for the neurological rehabilitation service. Her research interests include goal setting, vocational rehabilitation and upper limb recovery after stroke. 18 BRAIN INJURY PROFESSIONAL
conferences
Building futures…
2009 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. Contact: www.neuro2009.com. OCTOBER 14-17 – The North American Brain Injury Society’s Seventh Annual Conference on Brain Injury and the 22nd Annual Conference on Legal Issues in Brain Injury. Austin Hilton Hotel, Austin, Texas. Visit www.nabis.org for more information.
For more information:
15-16 – International Symposium on Neurorehabilitation. From Basics to Future, Valencia, Spain. Contact: www.neurorehabilitationvalencia.es.
www.bancroftneurohealth.org
NOVEMBER 11-14 – 29th Annual Meeting of the National Academy of Neuropsychology, New Orleans, LA. For more information, visit www.nanonline.org. 2010 FEBRUARY 3-6 – 38th Annual Meeting of the International Neuropsychological Soceity, Acapulco, Mexico. For more information, visit www.the-ins.org/meetings 24-27 – Biennial Interdisciplinary Conference of Brain Injury and the Family, Vienna, Austria. For more information, visit www.tbi-challenge.eu. MARCH 10-14 – 8th World Congress of the International Brain Injury Association, Washington, DC. Contact: congress@internationalbrain.org or visit: www. internationalbrain.org. 21-25 – 6th World Congress for Neurorehabilitation, Vienna, Austria. For more information, contact Tracey Mole, traceymole@wfnr.co.uk or on the web, www.wcnr2010.org. MAY 23-27 – 17th European Congress on Physical Medicine & Rehabilitation, Venice, Italy. Contact: www.esprm.org.
(800) 774-5516 425 Kings Highway East, P.O. Box 20 Haddonfield, NJ 08033-0018 USA 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. • Stroke • Electric shock/lightning strike • Degenerative diseases • Infectious diseases • Early stage moderate dementias • Tumors • Brain surgeries • Many neurological disorders For information and admissions, call 1-800-782-3299. Our facilities are adapted to accommodate all levels of accessibility.
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
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Cognitive Rehabilitation for children and youth: Moving toward collaborative partnerships by Juliet Haarbauer-Krupa, PhD Introduction
Cognitive rehabilitation has long been known as an effective intervention practice for remediation of the cognitive and behavioral deficits following brain injuries and strokes (BIAA, 2006; Butler, Fairclogh, Katz, et al., 2008; Cicerone, Dahlberg, Malec, et al., 2005; Laatsch, Harrington, Hotz, et al., 2007). By definition, cognitive rehabilitation is a “systematically applied set of medical and therapeutic services designed to improve cognitive functioning and participating in activities that may be affected by difficulties in one or more cognitive domains” (Katz, Ashley & O’Shanick, 2006). Cognitive rehabilitation follows recovery from a brain injury. In the early phase of recovery, cognitive remediation programs facilitate skill return and provide family education. In later phases of recovery, return to an independent lifestyle is a primary goal with efforts targeted to compensatory strategy training. Theoretical models of cognitive rehabilitation propose a systematic, goal directed approach to improved optimal functioning in school, community and home. Different philosophical and service delivery approaches form the concept of cognitive rehabilitation, with some advocating for skill-based intervention and others proposing compensatory strategy training. Both approaches have merit in children’s programs. 20 BRAIN INJURY PROFESSIONAL
Recent investigations about cognitive intervention in a medical setting demonstrated effectiveness of a skill based approach for academic skill improvement for acquired brain injuries (Butler et al., 2008). However, beyond the initial medical treatment, children with acquired brain injuries spend very little time in the medical model of cognitive rehabilitation. In the last several years, changes in medical insurance coverage result in either denial or restriction of services. After medical treatment for a brain injury, the majority of children go home to their parents, schools and communities and only a small portion of children remain hospitalized for rehabilitation services (Di Scala, Osberg, & Savage, 1997). In this study, 75% of the children who displayed functional impairments were discharged to home without an active rehabilitation program and less than 2% were referred for educational assistance at school. A similar trend occurs in the state of Georgia following emergency room visits for TBI. Since 2004, approximately 19,000 visits are reported each year in the Georgia Central Registry for children under age 19, with the majority of children discharged home to the care of parents. The percentage of children from this injury count classified as Traumatic Brain Injury in the annual Georgia Department of Education Count approximates 2%. Both sets of figures con-
trast with research reports of a special education placement rate of 62-79% for moderate to severe injuries when hospitalized children are tracked following discharge ( Kinsella, Prior, Sawyer, et al., 1995; Taylor, Yeates, Wade, et al., 2003). A number of reasons account for the discrepancy in reporting, including lack of incidence figures documenting the rate of cognitive impairment in the total population of children seen in emergency rooms for TBI and difficulty tracking children receiving services in other educational categories at school. For children who need continued services following medical treatment, a heavy burden of care falls on the family, community, and school services. Children are more likely to spend most of their recovery period in the schools, a system that is becoming the long-term rehabilitation program for children and youth. School system models focus on learning needs, and “maintaining” a child in an educational program. These mandates differ significantly from medical models that strive for optimal recovery and improved quality of life. Proposals for more “ecologically based” approaches which deliver cognitive rehabilitation in the child’s environment of home, school and community have the potential to effectively extend intervention beyond the medical model and bridge the gap between both models of service for children (Anderson & Catroppa, 2006; Ylvisaker et al., 2002). Consensus about children’s outcomes following brain injury is that impairments in cognitive and behavioral skills impact educational and social functioning. Younger children and children with more severe injuries are particularly vulnerable to long-term cognitive impairments. Developmental expectations for preschool children are dramatically different from teenagers who have already acquired a larger foundation of developmental milestones and knowledge. For children injured at a younger age, problems can change in severity and scope over time as development proceeds. A model that incorporates checkpoints along the developmental continuum to track the impact of cognitive impairments on school achievement and social participation and determine efficacy of intervention is appropriate for children. Best practices for cognitive rehabilitation for children and youth
Several key factors comprise the best practices for cognitive rehabilitation for children and youth. Children are different from adults
Compared to adults who sustain a TBI, children’s cognitive impairments affect the ability to achieve developmental milestones not previously attained, impact school achievement, and restrict the ability to participate in age appropriate social and extracurricular activities. Effects of the brain injury may be delayed, especially for young children. As they proceed through development, children and their parents may be unaware of the need to change direction in approaches to learning and interaction due to cognitive impairments. Unique issues for children require models of cognitive rehabilitation to provide checkpoints and flexibility. Parents and caregivers are critical partners
An important practice is to partner with the child’s family. Children do not live in isolation but rather in the context of the family unit. Early in recovery parents are the best sources of
information about the child’s preinjury medical history, school achievement and approaches to learning, social functioning, and goals for adulthood. Following medical treatment for a brain injury, parents and caregivers become the primary case managers of children’s care as they move from the medical to the educational system. Parents convey pertinent medical information from rehabilitation to the schools. The large degree of variability in parenting practices, supervision, and reaction to the stress and burden of a catastrophic injury further complicates case management of children’s services and outcomes. Models that stress longitudinal monitoring of progress provide an opportunity to monitor aspects of parent and family factors that contribute significantly to child outcomes. Education and support for parents and caregivers about the potential for long-term effects of the injury is crucial. Injury adjustment is part of the process
As children proceed through recovery, the changes in cognitive skills from their previous level of functioning become apparent in school and the community. Effective cognitive rehabilitation programs integrate opportunities for self-evaluation of performance and feedback in protected settings. This style of therapy is rarely accomplished in a school-based model whose focus is on learning and achievement rather than remediation of processes and developing self-awareness of performance. Both parents and children are adjusting to changes in the child’s cognitive skills and behavior. Best practices accommodate and guide this adjustment. Transitions between service models require planning and communication
Approaches incorporating medical care with educational transitions are effective with assisting children moving from the medical to the educational model, particularly early in recovery. Programs that provide educational liaisons and develop schoolrelated strategies as part of medically based treatment bridge the gap between the medical and educational models of care. Day rehabilitation programs that simulate a school-like environment in a medical setting are rare but valuable transition services for children leaving the hospital following brain injury. In these types of programs, children have a chance to approach academic materials and receive feedback on their performance from experts in therapy and educational interventions relatively early in the recovery phase prior to returning to school. Look to principles of learning and development
At later levels of recovery and for many years after the injury, direct instruction and compensatory strategy teaching are methods that hold promise to meet the increasing requirements for independence as the child progresses through school. Researchers report efficacy of these approaches based on child learning principles and use in other populations of children with disabilities (Glang, Ylvisaker, Stein et al., 2008). These two aspects show promise for extending what may be termed cognitive rehabilitation in the medical setting to instructional practices for children in the schools. A reexamination of cognitive intervention after acquired brain injuries in children is in order. Evolution of new models of care integrating principles of medically based cognitive rehaBRAIN INJURY PROFESSIONAL
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bilitation into the child’s environment of school and community programs as well as providing methods to monitor the child’s progression in their development through transition to adulthood is needed. Cognitive rehabilitation for children requires partnership with families and monitoring of the injury effects on development in progress and academic achievement outcomes. This effort requires collaboration between medical, school and community services to assure appropriate interventions for the child’s stage of development and career goals. Future Directions
Because children currently spend so little time in the medical model following their injury, it is critical that professionals educate health payors about the unique needs of children and at the same time develop approaches to apply the principles of cognitive rehabilitation to the environment where children spend the most time. The best practice is to build collaborative models of cognitive rehabilitation for children that join families, medical facilities, schools, and community services to track the child’s progress and intervene when required through the transition to adulthood. Research investigations examining children longitudinally after a brain injury are instrumental with developing comprehensive models of care for children following a brain injury. References
Anderson, V., & Catroppa, C., Advances in postacute rehabilitation after childhood-acquired brain injury: A focus on cognitive, behavioral and social domains. American Journal of Physical Medicine and Rehabilitation, 85, 767-778, 2006.
Butler, R.W., Copeland, D.R., Furlough, D.L., Mulhern, R.K., Katz, E.R., Kazak, A.E., et al., A multicenter randomized clinical trial of a cognitive remediation program for childhood survivors of a pediatric malignancy. Journal of Consulting and Clinical Psychology, 76:367-378, 2008. Cicerone, K.D., Dahlberg, C., Malec, J.F., Lagenbahn, D.M., Felicetti, T., Kneipp, S., et al., Evidence-based cognitive rehabilitation: Updated review of the literature from 1998 through 2002. Arch Phy Med Rehabil, 86:1681-1691, 2006. Di Scala,C., Osberg, & Savage, R.C., Children hospitalized for traumatic brain injury: Transition to post acute care. J Head Trauma Rehabil, 12, 1-10, 1997. Glang, Ann., Ylvisaker, M., Stein, M., Ehlhardt, L., Todis, B., & Tyler, J., Validated instructional practices: Application to students with Traumatic Brain Injury. J Head Trauma Rehabil, 23: 243251, 2008. Katz, D. I., Ashley, M.J., O’Shanick, G.J. & Connors, S., Cognitive Rehabilitation: The evidence for funding and case for advocacy in brain injury. Retrieved January 16, 2009 from the Brain Injury Association of America website at www.biausa.org/policyissues.htm, 2006. Kinsella, G., Prior, M., Sawyer, M., Murtaugh, D., Eisenmajer, R., Anderson, V., Bryan, D., & Klug, G. (1995). Needs of children and adolescents following traumatic brain injury. J Head Trauma Rehabil, 339-351. Laatsch, L., Harrington, D., Hotz, G., Marcantuono, J. Mozzoni, M.P., Walsh, V., & Hershey, K.P., An evidence-based review of cognitive and behavioral rehabilitation treatment studies in children with acquired brain injury. J Head Trauma Rehabil, 22: 248-256, 2007. Taylor, H.G., Yeats, K.O., Wade, S.L., Dotard, D., Stain, T. Mont petite, M., Long-term educational interventions after traumatic brain injury in children. Rehabilitation Psychology, 48: 220-247, 2003. Ylivisaker, M., Hanks, R., & Johnson-Greene, D., Perspectives on rehabilitation of individuals with cognitive impairment after brain injury: Rationale for reconsideration of theoretical paradigms. J Heard Trauma Rehabi, 17 : 191-209, 2002.
About the Author
Dr. Haarbauer-Krupa has 25 years of clinical experience working with children who have acquired brain injuries. She is Coordinator of Research Projects in Rehabilitation Services at Children’s Healthcare of Atlanta. Current research projects include understanding outcomes of preschool children with traumatic brain injuries and the development of a summer cognitive rehabilitation program for teenagers to teach compensatory strategies. She is also a member of the Children and Youth Committee of the Brain and Spinal Cord Injury Trust Fund Commission in Georgia. Previously she coauthored three chapters on cognitive rehabilitation for children.
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obituary mark ylvisaker Mark was a longtime Professor of Communication Sciences at the College of Saint Rose, teaching courses in Communication Disorders. As a member of the faculty at St. Rose, Mark was popular with students and staff alike and was, in many ways, the heart of the Department of Communication Sciences. He began his professional life as a philosopher, eventually changing his career path and becoming a Speech-Language Pathologist, completing his Ph.D. in Communication Disorders at the University of Pittsburgh. Mark’s background in philosophy affected his practice as a clinician and teacher, and he became widely known for his critical thinking and his insightful approaches to supporting individuals with disability. Over the course of his 35 year career, Mark gained worldwide distinction for his ground-breaking approaches to brain injury rehabilitation and his clinical work with children and adolescents with disabilities, assisting programs in all 50 states and over 15 countries in the development of innovative services. He was known and respected throughout the world for his boundless optimism and his passionate commitment to his work, to the people he supported, and for his unique ability to help individuals with disabilities, families, and professionals overcome barriers and achieve success in life. While his professional skills were extraordinary, Mark’s warm personality and positive outlook often had the greatest impact on others; as a result, he became a valued friend and colleague to many throughout the world. Mark authored over 100 professional publications, including six books, related to brain injury, autism, and neurogenic disabilities and served on the editorial boards of six journals. He was the recipient of many awards for his life’s work, including, most recently, a Distinguished Achievement Award from the Brain Injury Association of America and the prestigious Frank R. Keffner National Lifetime Clinical Career Award from the American Speech Language and Hearing Foundation. While Mark appreciated his many professional accolades, his greatest source of professional joy was his day-to-day work with children, adolescents, and adults with disabilities. His tireless dedication to the well-being of others and the power of his positive personality helped change untold lives for the better. As Mark’s many friends and colleagues recall: “Mark was the clinician we all want to be, the writer we all wished we could be, and the person we all strive to be. He was
once-in-a-lifetime, equally comfortable referencing the latest neuroscientific findings, the philosophies of Spinoza and Kant, and the musings of Yogi Berra when searching for the best way to support people with brain injury. Always the smartest guy in any room, he had the ability to make you feel like you belonged there with him, and you couldn’t help but feel better about life whenever you worked with him. His time with us was criminally short, but his effects on us will last long beyond his lifetime.” - Tim Feeney, PhD.
Mark was that special kind of person who understood very complicated concepts (e.g., executive functions) as well as anyone, yet could bring them to a practical, meaningful level for the “everyday people” with whom he was training and treating. Gerard A. Gioia, PhD A word that characterizes Mark for me is devoted. He was devoted to the field of ABI and to his clients. But mostly when I think of Mark, I think of his devotion to his wife, children, and his Scandinavian heritage. My last correspondence with Mark was about his family and his brother John who composes music ( much of it used in the Lutheran Church). Mark said that John would sing and play “Bourning Cry” at his memorial service and wished that he could be there to hear it. I am sure Mark was there as I am sure he will be with many of us as we continue work with all of “our kids”. Roberta DePompei, PhD “I first met Mark just before he finished his PhD at the University of Pittsburgh. I clearly remember when he called to tell me he had successfully completed his dissertation. The next time I saw him I sat for a few hours asking question after question about his dissertation defense. He was so patient with my questions, as I clearly remember he was from then on with everyone I observed him with over the next 25 years. He was a friend and was there for me when, more than 10 years later, I was ready for my own dissertation defense. His ethics were unsurpassed in our field and he did not compromise his beliefs. His impact lives on in all of us.” Janet Williams, PhD Mark was a life-long learner, and I am grateful I had the opportunity to share (and argue) with him about instruction, training, and many other topics. I will miss him very much. Ann Glang, PhD BRAIN INJURY PROFESSIONAL
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news you can use The Society for Cognitive Rehabilitation
Cognitive Rehabilitation Recommendations
The Society for Cognitive Rehabilitation in its “Recommendations for Best Practice in Cognitive Rehabilitation Therapy: Acquired Brain Injury� (2004) states:
The Brain Injury Association of America (2006) offers the following recommendations on cognitive rehabilitation:
The Society for Cognitive Rehabilitation recommends a standard battery of assessments sufficient to form hypotheses about the underlying cognitive impairments and deficits that interfere with cognitive functioning. The battery should be sufficient as to enable decision making about which treatments are necessary. In rehabilitation settings, standardized psychometric assessments, questionnaires, structured interviews and behavioral observations across a range of functional settings with equal emphasis should be used. Results of various measures should be cross-referenced with each other and across environments and testing times and dates. Results should be shared with the person being tested and that person should participate in design of the treatment program where possible. Reassessment should be undertaken at regular intervals to monitor and report progress. Evaluative results and treatment plans should also be reviewed with the caregiver. Evaluative results should be used to make prognostic statements which should also be shared with the brain injured person. Treatment goals should be created arising from the assessment and should include outcome goals, long-term goals and short-term goals. All goals should be shared with and agreed to by the person with a brain injury. (see Malia K, Law P, Sidebottom L, Bewick K, Danziger S, Schold-Davis E, Martin-Scull R, Murphy K, & Vaidya A., 2004).
World Association of Paediatric Brain Injury A new organization, the World Association of Paediatric Brain Injury (WAPBI), has been established to serve multidisciplinary professionals working with children and young adults with ABI and their families. The inaugural WAPBI planning meeting was held on July 9th, 2009, in Toronto, Canada, where the Association’s structure, mission and vision were discussed. An initial slate of directors were selected with Jane Gillett, MD, elected as President and Ronald Savage, EdD, elected as Chairman. The planning meeting took place during a special session of the 1st Annual Symposium: Brain Injury in Children, sponsored by the SickKids Centre for Brain & Behavior at the Four Seasons Hotel in Toronto. Over 80 professionals attended the WAPBI planning meeting which was followed by a series of talks from a number of prominent speakers and researchers in the field of pediatric ABI. For more information on this much needed organization, please contact Ronald Savage, EdD, at rcsavage@comcast.net. 24 BRAIN INJURY PROFESSIONAL
1. Cognitive rehabilitation should be a covered benefit for persons with brain injury, supported by all public and private payers. 2. Cognitive rehabilitation should be based on sound scientific theoretical constructs and, when available, evidence for best practices, with clearly stated goals and quantifiable outcomes. 3. Cognitive rehabilitation should be provided by qualified practitioners. Such practitioners should be clinicians who have fulfilled the requirements for professional certification and training in their respective medical and allied health disciplines. 4. Cognitive rehabilitation treatment strategies and goals, and the duration, scope, intensity, and interval of treatment should be determined based on appropriate diagnosis and prognosis, the individual functional needs of the person with brain injury and reasonable expectations of continued progress with treatment. 5. Treatment planning, case management and health insurance coverage for cognitive rehabilitation should respect the longterm scope and changing needs of persons with brain injury. Necessary treatment for cognitive problems should not be constrained by arbitrary time limits or caps on the number of treatment sessions. Improved longer-term systems of care should be developed, supported by public and private payers, employing disease management models, to support persons with brain injury with extended needs. 6. There should be an increase in priority for public research funding of questions related to cognitive rehabilitation to achieve better understanding of cognitive disorders after brain injury and how cognitive rehabilitation interventions improve recovery and functioning. Specific priorities should include questions about what interventions are effective for what particular problems, at what intensities and intervals post-injury. 7. There should be an increased emphasis on proper education, training, certification and continuing education for professionals and support staff involved in cognitive rehabilitation. 8. The particular needs of children with brain injury and their families, including developmental and educational implications of cognitive rehabilitation, have to be addressed by providers, payers and the entire health care system. 9. Cognitive rehabilitation should be integrated into and coordinated with vocational services, special education, and community based programming such as supported living, support networks, and recreation groups so that individuals move seamlessly within a comprehensive, coordinated system of care that is adequately funded. 10. All states should have an external review process for medical claims, and individuals who have been denied coverage for cognitive rehabilitation should fully avail themselves of all internal and external processes.
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Cognitive Rehabilitation in Action in New Zealand by Shona Paterson, Robyn Pooley, Lucy Wedgewood McKenzie, Janis Henry, and Penny McGarry
Integrated Partners in Health Ltd (IPH) specializes in the provision of community based Assessment and Rehabilitation services for people who have sustained a brain injury and/or spinal cord injury. It is unique in New Zealand, and perhaps the rest of the world, that the service is nurse led, driven by the passion of its directors for making a difference in the lives of people with brain injury. The IPH philosophy centers on providing effective assessment and intervention for clients referred to our service, to facilitate a timely return to independence, within the limits of their injury or disability. It is the holistic philosophy and strong interdisciplinary team ethos that makes it so successful. New Zealand has a universal “no fault” personal injury accident insurance covering all people living in New Zealand and includes visitors to our country. The Accident Compensation Corporation (ACC) is responsible for purchasing services to ensure that injured people’s rehabilitation needs are provided for in an appropriate and timely manner. IPH is contracted to provide services to ACC claimants. Through our range of contracts with ACC, IPH offers a seamless pathway for our clients, providing a consistent approach to rehabilitation across the spectrum from early post acute, assessment and rehabilitation including returning to work and independence in general. This includes services for the mildly injured (Concussion Service) to the more severely injured (Training for Independence) and includes a vocational service assisting clients to prepare for, find and return to employment as appropriate. The interdisciplinary team includes registered nurses, occupational therapists, physiotherapists, speech language therapists, social workers and psychologists supported by a team of skilled administrators. As a team, all the professions have accessed training and resources in Cognitive Rehabilitation (CR). Being community based allows IPH to provide ‘rehabilitation in context’ in the clients’ home, school, work place or community as appropriate. This facilitates carry over of rehabilitation into everyday activities and is the key to obtaining successful outcomes. Using CR has been challenging at times as it requires the client to complete “homework” left for them. It is also immensely rewarding as it enables clients to regain control of their rehabilitation as they are given the education to develop an un26 BRAIN INJURY PROFESSIONAL
derstanding which promotes increased awareness. The clients are able to put the new learning into practice immediately in their natural environment and often functional improvements can be seen straight away. The following are two case studies which demonstrate how CR has been utilized in the community setting:
Case Study One
B was a 47 year old married man with two children. He sustained a severe traumatic brain injury following a 10metres fall from a roof onto a concrete floor. B’s goals were to return to “normal family life” then work. Initially the occupational therapist worked with B on strategies for managing his fatigue and cognitive difficulties through functional activities such as cooking and shopping. This was successful for each activity; however there was no carry over. For example B could successfully cook a meal for his family with a sequenced recipe but not if he followed a cookbook recipe. A neuropsychological assessment identified that B had significant problems in attention, information processing, memory and executive functioning. The therapist attended a cognitive rehabilitation course and B agreed to trial some cognitive rehabilitation exercises and education obtained from the training. B received education about the five levels of attention in the Sohlberg and Mateer model (Sohlberg and Mateer, 1989). A handout covered examples for each level and B was asked to use examples from his experience. It appeared from the examples he gave that education alone did not enable him to fully understand his attentional difficulties. B began some process training exercises (designed to minimize his specific underlying skill impairments) using tape recordings and answer sheets which were left with him. These were completed for a few weeks, gradually building the amount of time he could tolerate and the level of distraction. He began to show awareness of distractions such as background noises and how these affected him. B then related a “eureka” moment. His daughter asked him to read to her while he was watching TV. B snapped at her as he often had since the injury. Suddenly he understood why and realized it was not her fault. B explained to the therapist that she
had not become more demanding; he was unable to process her talking while he was watching TV. B developed his own strategies for activities of daily living from this point. He then adapted these to manage fatigue and his frustration with family members. B asked for clinical psychology input and quickly developed a new range of coping skills. A repeat neuropsychology assessment showed that despite continued difficulties he had improved markedly in attention. His main barrier remains fatigue; however he now manages this independently. The insight he appeared to gain from the CR exercises has helped him sustain positive family relationships on his road to recovery.
demonstrated his ability to apply strategies that had been taught to him, for instance, structuring and grading activities (choosing social situations and managing different aspects such as cognitive demand, fatigue and background noise). Prior to returning to university he was provided with a laptop and software to increase his independence with his study. R and the therapists explored these and other strategies to manage his cognitive and communication difficulties. After eleven months of community based rehabilitation, R achieved all his physical goals, returned to living in a flat and started back part-time at university.
Case Study Two
Systematic CR has offered our therapists a framework for assessing and treating cognitive impairment following their injury. The structured focus benefits the client group as it offers a more focused approach to treatment. The focus on education enables clients to take control of their recovery. Process training enables the client to focus on exactly where tasks and activities are failing, which in turn allows for the development of increased awareness. This increased awareness stimulates the ability to adapt strategies to a range of situations thus promoting recovery. Implementation in the community setting provides challenges as clients are usually seen weekly and CR provides more benefit if done frequently. The use of structured “homework” for between sessions has been shown to bridge this gap. Systematic CR also provides the inter-disciplinary team with a framework for debate and discussion regarding a client’s cognitive progress. All disciplines are able to reinforce the education to the client using the same terminology and processes. This ensures the client is offered a consistent message on a regular basis which is particularly useful for clients with memory impairment.
R is a 21 year old man who had an extensive left middle cerebral and anterior cerebral artery infarction. R spent 12 days in acute care and six weeks in inpatient rehabilitation. R was a university student and national level sportsman. R presented with fatigue, right sided weakness, reduced sensation in his right arm and hand, cognitive difficulties including poor attention and information processing, a moderate expressive aphasia and verbal apraxia. He was independent with personal cares and was able to make his needs known. R’s goals were to return to sports and university. Short term goals included increasing the strength and range of movement of R’s upper and lower limbs, and improving the sensation of his arm and hand. R focused on returning to study and wanted to work on reading rather than verbal expressive skills. The 4 approaches to CR were used: Education (to develop awareness and engagement), Process training (to maximize the underlying skills), Strategy training (to compensate for difficulties) and Functional activities training (to ensure generalization and application into real life situations). R was provided with education about stroke and the brain. Education was also provided on the different levels of attention, memory, executive functions, language and fluency. R completed process training exercises from sources such as the Brain Injury Workbook (Powell and Malia, 2003). These initially focused on developing sustained attention, moved on to developing selective attention (ability to ignore background distraction of music or talking), and finally onto developing alternating and divided attention (multi-tasking). As R progressed with his therapy he began working on exercises designed to improve his information processing (auditory and visual), memory, executive functions, language and fluency skills. In addition to these exercises R practiced a ‘lecture type scenario’ listening to information and writing notes. He also wrote short essay style pieces and presentations to challenge his flexible thinking and expressive language skills. Simultaneously R participated in functional activities that gave him opportunities to learn from experience about his difficulties in situations such as cooking, managing social situations and using the computer. E-mails, internet and text books were also used as functional activity training. The university was contacted and R attended a practical laboratory session and relevant lectures to work on his memory and concentration. Eight weeks of a work trial were also used to look at attention, problem solving and interaction with unfamiliar people. Participating in functional activities enabled R to take increasing responsibility for his rehabilitation as he was encouraged to complete tasks between therapy sessions. He quickly
Summary
References
Powell T & Malia K: Brain Injury Workbook: Exercises for Cognitive Rehabilitation. Bicester, UK: Speechmark Publishing Ltd, 2003. Sohlberg MM & Mateer CA: Introduction to cognitive rehabilitation: Theory and practice. New York:The Guilford Press, 1989.
About the Authors
Shona Paterson has worked in health care since 1989. She studied to be an Occupational Therapist at London’s Southbank University and qualified in 1999. Shona joined Integrated Partners in Health in January 2005. Robyn Pooley is a Speech Language Therapist working at IPH. She trained at the University of Manchester in the UK and initially worked in London before moving to Auckland, New Zealand in 2006. Since then she has worked primarily in Neurorehabilitation. Lucy Wedgwood McKenzie is an Occupational Therapist working at IPH Ltd. She graduated from Brunel University London in August 2000. Lucy worked for 4 years in the UK before moving to New Zealand in November 2004. The majority of her roles have been in neuron-rehabilitation. Janis Henry is a Registered Nurse who has been working in the field of neuron-rehabilitation since the late 1970’s and has been instrumental in establishing residential and community based rehabilitation services in Auckland. She has considerable experience in assessment and rehabilitation and continues to have a clinical case load. Janis is a co-owner and Director of IPH which was established in 2001. Penny McGarry is a Registered Nurse with a special interest in the field of neuron-rehabilitation. Penny continues to carry a clinical case load. She has considerable experience working in, developing and managing assessment and rehabilitation services within post acute, residential and community settings, having worked in the sector for more than 25 years. Penny is a co-owner and Director of IPH. BRAIN INJURY PROFESSIONAL
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Lash &Associates Publishing/Training Inc. We make it easier to understand, help, treat and live with brain injury in children, adults and veterans. Cognitive Rehab Tool Kit on traumatic brain injury Clinicians and therapists will find this Tool Kit contains practical tools and programs for assessing and treating executive changes after acquired brain injuries in
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adolescents and adults. How to do Hero’s Journey Cognitive Rehab Therapy By Kit Malia & Anne Brannagan ~ 2008 a guide for all of us Taking a unique approach to understanding By Kit Malia & the complexity and impact of acquired brain Anne Brannagan ~ 2008 injuries, This workbook is filled with practical These manuals take a practical exercises for clinicians, families, and hands on “How to� approach to individuals to use in rehabilitation settings, cognitive rehab therapy. They have been written specifically community programs and at home. for therapists and families working with and living with persons with brain injury.
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bip expert interview An Interview with Keith D. Cicerone, PhD, ABPP, FACRM About Keith D. Cicerone Keith D. Cicerone, Ph.D. is the Director of Neuropsychology and Rehabilitation Psychology at the JFK-Johnson Rehabilitation Institute and New Jersey Neuroscience Institute, JFK Medical Center. He has been the Clinical Director of the Cognitive Rehabilitation Department at JFK-Johnson Rehabilitation Institute since 1985. Dr. Cicerone is the Project Director for the New Jersey Traumatic Brain Injury Model System funded by the National Institute on Disability and Rehabilitation Research. He is Clinical Professor of Physical Medicine and Rehabilitation at the Robert Wood Johnson Medical School, University of Medicine and Dentistry of New Jersey. Dr. Cicerone is the author of over 50 peer reviewed publications in the areas of traumatic brain injury and neuropsychological rehabilitation. His research has addressed the development and validation of interventions for impairments of attention and executive functioning after traumatic brain injury, and controlled trials of holistic neuropsychological rehabilitation. He is the primary author of two evidence-based reviews of cognitive rehabilitation after traumatic brain injury and stroke. In 2008, Dr. Cicerone received the 2008 Gold Key Award for “extraordinary service to the cause of rehabilitation” from the American Congress of Rehabilitation Medicine, in recognition of his clinical work, research, and advocacy on behalf of people with acquired brain injury who require cognitive rehabilitation. Could you explain for us what is meant by evidence based practice and what constitutes good evidence? Evidence based practice is the integration of the best research evidence for treatment effectiveness with clinical experience and consideration of the patient’s values. By “best research evidence”, we mean well conducted, clinically relevant studies that might demonstrate either that a treatment can under the right circumstances produce a desirable effect, or that the intervention is likely to be effective for a majority of patients when implemented in clinical practice. When we consider what constitutes “good evidence”, we put a lot of emphasis on whether the available research is based on controlled studies that have tried to isolate the effects of treatment and minimize the influence of other factors that influence outcomes. For that reason, randomized controlled studies are often given more weight in evaluating the research and developing evidence based recommendations. However, it is also true that randomized controlled studies may not be directly applicable to the patient who is actually sitting across from the clinician. I think it is important to emphasize that evidence based practice includes the clinicians’ experience and judgment in applying knowledge to the individual patient, as well as giving consideration to the patient’s values, beliefs and goals. Why is it important that clinicians are guided by published evidence? We are all prone to certain biases, and putting on our hats as clinicians does not eliminate these biases in our clinical judgments and reasoning. Reliance on published evidence that has been through peer review helps to keep us objective. I think that awareness and reliance on the published evidence should serve to make us more critical of the treatments that we are providing, and also to make us more open to alternative treatment approaches. The goal of evidence based practice is ultimately to establish treatments that rely on well-established and well validated techniques and principles, that apply to most if not all patients. How else can clinicians ensure they are evidence based? Getting regular input from peers and colleagues can be an effective way to supplement our knowledge based on the published evidence. This can be done through journal clubs, or by meeting with colleagues to discuss individual treatment cases – particularly those cases that represent a challenge to our thinking and our common assumptions. Based on your extensive experience in evidence based practice, what would you say are the strengths and weaknesses of the current literature in cognitive rehabilitation? We really have come far in our research efforts, particularly in our ability to describe some specific approaches to cognitive rehabilitation. We are beginning to standardize our treatment approaches, and to replicate the findings from studies in several areas, such as the remediation of attention. We are becoming more sophisticated in our application of controlled research designs, and more specific in the questions that we are asking – such as comparisons of different treatment 30 BRAIN INJURY PROFESSIONAL
approaches. However, we are a long way from translating the research evidence into clinical practice. Many of the studies of cognitive rehabilitation do not really provide enough information for the intervention to be replicated, either by other investigators or by clinicians. This is an area where single-case studies can be helpful and very appropriate, prior to conducting larger controlled studies. How could these weaknesses be overcome or reduced? One example is the increasing emphasis on developing “manualized” treatments. This means that the specific steps of the intervention are well described and specified. This will allow us to follow a well defined path in investigating different interventions, replicating our findings and systematically varying the delivery of the treatment to better understand how and why it might be effective. Even in clinical practice, the reliance on standardized interventions is common in many areas of medicine and psychology. This does not eliminate the need for clinical judgment, or the ability to make accommodations to these standardized interventions to address individual patient’s needs. Why is funding such a big issue for therapists who need to bill for cognitive rehabilitation services? There is an obvious answer to this question, although I do not want to impugn the motives of insurance carriers. As professionals, it may be that we have not been effective in presenting the benefits of cognitive rehabilitation. This will continue to be a challenge. We need to represent our practice in a way that relates specific interventions to specific functional changes and at the same time relate these interventions to outcomes that are relevant to patient’s daily functioning. I think there is no doubt that we can help this process by continuing to conduct welldesigned, well-controlled studies of cognitive rehabilitation for clinically representative participants using a range of relevant, health-related outcome measures. What do you predict for the field of cognitive rehabilitation over the next decade? First, we will begin to design our intervention studies so that they address more sophisticated and specific research questions. Understanding the effective ingredients and “mechanisms of action” of different cognitive rehabilitation interventions will receive increased attention. This will require better understanding of how changes in physiological measures, like functional neuroimaging, may relate to changes in brain organization and cognitive processing. At the same time, we need to understand that changes at a physiological level may not translate directly into changes in someone’s ability to perform everyday tasks, or to the subjective well-being. So we will need to develop some clear expectations about how different interventions operate and how they relate to different types of outcomes. Second, we will need to pay more attention to knowledge translation – how the research can be disseminated and influence clinical practice. Finally, we will need to do a better job of training the next generation of clinicians to provide evidence-based cognitive rehabilitation, including the development of specific training models and programs.
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non-profit news Brain Injury Association of America
BIAA is sizzling with activity! In partnership with our Business & Professional Council (www.braininjurycoucil.org), we’ve ensured that rehabilitation is included proposed health care reform legislation, and we are now trying to shape financing options to protect post acute providers if payments are bundled. A webinar on health care reform is scheduled for Aug. 19, 2009, and a joint Business Council Meeting and Business Practices College will take place in Washington, D.C., on Nov. 2-4, 2009. Insurance coverage of cognitive rehabilitation has been a centerpiece of BIAA’s policy efforts for the past three years. In December 2007, Drs. Doug Katz, Mark Ashley and Greg O’Shanick authored BIAA’s highly respected position paper with assistance from Drs. Wayne Gordon, Keith Cicerone and others from ACRM’s Brain Injury Interdisciplinary Special Interest Group. A year later, the Anthem Insurance Companies revised its coverage policies, citing BIAA’s paper among the authoritative sources consulted. In May 2009, United Health Care published a coverage change announcement in its Network Bulletin. BIAA noted these and other positive developments in a June 2009 letter to President Obama urging TRICARE coverage of cognitive rehabilitation for service members and their dependents with brain injury. We are awaiting the President’s response. BIAA, ACRM and the National Neurotrauma Society jointly authored a response to The New England Journal of Medicine article on mild TBI. We are partnering with stakeholders to increase TBI Act and TBI Model Systems funding and have launched a TBI Act reauthorization workgroup in preparation for renewing our signature legislation in 2011. BIAA is also actively engaged in eliminating the two-year waiting period for Medicare eligibility as well as lifetime insurance caps. In June, Dr. Ann Glang presented BIAA’s second webinar in our Caregiver Education Series, “School Issues & Brain Injury – What Parents Need to Know.” The next webinar is scheduled for Sept. 22, 2009, on the topic of Alternative Therapies presented by Dr. Josh Cantor. Planning is underway for the 2010 Brain Injury Litigation Strategies Conference, taking place April 29-30 at the MGM Grand Hotel in Las Vegas. BIAA needs support from the professional community for its advocacy and education activities. Please consider making a tax-deductible donation, becoming a corporate sponsor or joining the Business & Professional Council. See www.biausa.org for details.
International Brain Injury Association
Abstracts are now being accepted for IBIA’s Eighth World Congress on Brain Injury which will be held in Washington, DC, March 10-14, 2010. All abstracts accepted for the Congress on Brain Injury will be published in a supplemental issue of IBIA’s official journal Brain Injury. Abstracts will be reviewed by the Congress’s International Scientific Committee, which will determine the most appropriate presentation format (oral presentation or poster) for each abstract accepted. Submissions should ideally be data based and if not must be an assessment or treatment model description. We encourage proposals in the areas of basic science (particularly translational research) through the entire continuum of brain injury care (both pediatric and adult). The format for abstracts is pre-defined by our submission system, with text boxes for Introduction/Objectives, Materials/Method, Results, and Con-
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clusions. The deadline for submitting a paper for the Congress is October 12, 2009. IBIA 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 capitol, Washington, DC. In addition to a wonderful scientific program with world renowned experts in the field of brain injury, IBIA is 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, and the Jennett & Plum Award for Clinical Achievement in the field of brain injury medicine. There will also be several pre-Congress workshops covering Neuropsychiatry, Transcranial Magnetic Stimulation (TMS) and Transcranial Direct Current Stimulation (tDCS), Advances in Assistive Technology and Constraint Induced Therapy. Special post-Congress symposia will cover Clinical and Forensic Controversies of Effort Testing, Family Outcomes and Interventions, Blast Injuries, Pediatrics, Neurobehavioral Management and Vocational Rehabilitation. There will also be some new features added to the Congress which we hope all attendees will find educationally beneficial. We look forward to having a wonderful exhibitor turnout to further complement the conference networking and learning experience. As usual, we are planning a number of wonderful social events, including a few surprises, as well as opportunities to further explore and appreciate the culture and diversity of Washington, DC. For more information on the World Congress, visit www.internationalbrain.org.
North American Brain Injury Society
The North American Brain Injury Society received a significant increase in abstract submissions to our Annual Conference on Brain Injury this year -- thank you to all those who sent in their research. All accepted abstracts from the meeting will be published in an upcoming issue of the Journal of Head Trauma Rehabilitation which will be distributed at the Conference. Our 7th annual meeting is scheduled to take place in eclectic city of Austin, Texas on October 14-17, 2009. The preliminary program has now been completed and has been posted on the NABIS website. This year’s conference chair, Harvey E. Jacobs, PhD, assisted by the NABIS scientific planning committee, have put together an exceptional program which will feature an outstanding faculty of internationally recognized speakers, as well as several new features including an evening “meet the experts” session and special panels covering Blast Injury, State/National Trends and Issues Impacting Brain Injury Care, and Emotional Perception. Also new this year, with the support of Lash and Associates Publishing/Training and the Sarah Jane Brain Project, NABIS is pleased to present a special pre-conference symposium on Wednesday, October 14. This symposium will outline a plan for a comprehensive, integrative, accessible, culturally sensitive, long-term and child/family centered circle of care for children, adolescents and young adults with acquired brain injury. The plan was created by the Sarah Jane Brain Foundation with a panel of national experts including families and family advocacy organizations, attorneys, physicians, allied health care professionals, educators and researchers. NABIS has also organized several
pre-conference workshops with topics including Sexuality and TBI, the Mayo Portland Outcome instrument and a “Legal 101” session for medical professionals. A highlight of our Thursday awards luncheon will be a presentation by Mark McEwen, former morning personality from CBS’s The Early Show. The NABIS Annual Conference on Brain Injury offers a variety of exhibit and support opportunities for companies wishing to market their services to our conference attendees. As usual, exhibit space is going fast – don’t miss this opportunity to meet face-to-face with the decision makers who are shaping the field of brain injury! Call Joyce Parker at (713) 526-6900 for more information on reserving a booth. The NABIS Annual Conference on Brain Injury will be held in conjunction with the 22nd Annual Conference on Legal Issues in Brain Injury. Attorneys can expect the very latest information on brain injury litigation at this three-day hands-on conference which is considered a “must attend” event for all professionals involved in brain injury litigation. The conference features an all-star cast of top trial attorneys and medical experts who will present a broad array of practical information covering the latest literature, diagnostic testing methods, rehabilitation, case management, trial techniques and cutting-edge demonstrative evidence. Attorneys will also benefit from an overview of the medical science of brain injury from an outstanding faculty of researchers and clinicians presenting the very latest in brain injury science, treatment and testing. New this year, on Thursday, October 15, there will be a mock direct and cross examination of a plaintiff witness (Dr. Robert Voogt) and a defense witness (Dr. Howard Katz) providing attendees with a unique opportunity to benefit and learn in this live setting. Programs, invited speaker lists and registration information
for both meetings are available on the NABIS website, www. nabis.org.
NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS
The headquarters of the National Association of State Head Injury Administrators (NASHIA) has moved to a new office suite in the same building. Our new mailing address is Suite 205, 4330 East West Highway, Bethesda, MD 20814 and our phone number has been changed to (301) 657-8855 ext. 1202. The website remains unchanged at www.nashia.org. Please be sure to check the website regularly for updates on the Association and for information regarding consulting, technical assistance services and information sharing that are available through NASHIA. NASHIA’s 20th Annual States of the States (SOS) Conference is being held at the El Dorado Hotel in Santa Fe, New Mexico from October 27-30, 2009. This year’s conference, which is entitled “Thinking Differently in the City Different…Brain Injury Innovation and Promising Practices”, promises to be one of the most educational and informative events yet. NASHIA has again secured a variety of impressive speakers and panelists from across the country to be part of the SOS Conference. The pre-conference intensive will be “Partners with Impact: Linking Brain Injury Research, Policy, & Services”, and will be of great benefit to a wide audience of individuals concerned with brain injury and creating a stronger collective voice. NASHIA is excited about collaborating with the North American Brain Injury Society on a joint meeting in 2010. Bringing together clinical perspectives, public policy and state interests, this will be a really dynamic and informative meeting.
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legislative round-up Susan L. Vaughn, Editor, Legislative Issues “Great things are accomplished by talented people who believe they will accomplish them.” Warren G. Bennis In keeping with his campaign promise, President Obama continues to push health care reform legislation to address the growing number of uninsured. Both the US House of Representatives and Senate have tasked their respective committees with developing legislation that can be supported by both Congress and the Administration. On June 19th, the chairmen of the three House committees that have been working in concert on health reform unveiled their discussion draft. (The three House Committees are the Education and Labor Committee, Ways and Means Committee, and Energy and Commerce Committee.) The June 19th draft purports to build on the current health care system by strengthening employerprovided care and covering more Americans who may be without health care coverage. The draft includes the public health option to provide Americans with a choice. Under the House proposal, the basic package would include preventive services with no cost-sharing, mental health services, dental and vision for children, and caps the amount of money a person or family spends on covered services in a year. Individuals and families with incomes below 133 percent of the federal poverty level would be eligible for an expanded and improved Medicaid program. Senior citizens and people with disabilities would benefit from provisions that fill the donut hole over time in the Part D drug program. The draft bill includes rehabilitative services as part of the minimum benefits package and does not impose annual or lifetime limits on coverage. However, of concern to disability groups is that the draft proposal does not include any provision to improve coverage for home and community-based long-term services and supports for over the 200 million adult Americans who lack any insurance protection against the cost of long-term services and supports. Such services are critical to promoting health and preventing illness. In the Senate the Senate Finance Committee and the Senate Health, Education, Labor and Pensions (HELP) Committee have been developing their proposals for extending coverage and methods for paying for it. Sen. Christopher Dodd (D-CT) has been leading the markup in the absence of Chair, Senator Edward Kennedy (D-MA) who has been at home due to his illness. After the Congressional Budget Office (CBO) released its cost 34 BRAIN INJURY PROFESSIONAL
estimates for the Senate HELP Committee’s July 17 proposal, and estimated the cost as high as $1.6 trillion, the Senate Democrats agreed to scale back the proposed legislation. The Senate HELP Committee’s proposal, The Affordable Health Choices Act, includes many provisions for individuals with disabilities, including the Class Act, market reforms to prohibit exclusion based on underwriting practices and pre-existing conditions, and creation of a prevention trust fund with dedicated funding of $10 billion and portions of Senator Tom Harkin’s (D-IA) Promoting Wellness for Individuals with Disabilities Act. The CLASS Act has also been introduced as separate legislation in the House (H.R. 1721) and in the Senate (S. 697). The bill establishes a national insurance program financed by voluntary payroll deductions and would allow adults who become functionally impaired to purchase community living assistance services and supports. The CLASS Act is supported by over 100 national organizations representing seniors, people with disabilities and faith-based organizations. The President released his detailed FY 2010 budget request on May 7th. The Administration is Recommending that $600 billion as reserve funds be set aside for purposes of reforming the health care system. To fund some of the President’s new initiatives, the Administration is proposing $17 billion in proposed budget cuts and the elimination of 121 programs that are deemed duplicative or ineffective. Earmarks are also cut from the bill. The President is recommending $10 million for the HRSA Federal Traumatic Brain Injury (TBI) Program for FY 2010, a small increase from the current fiscal year. The program awards grants to states to expand service delivery and to state Protection & Advocacy Systems to expand their services to include individuals with brain injury. The House Labor, Health and Human Services and Education Appropriations Subcommittee, which has jurisdiction over the majority of disability programs and brain injury programs, is scheduled to mark up its bill on July 8 with the full committee scheduled for July 14. Meanwhile, Congressional Brain Injury Task Force Co-chair, Rep. Bill Pascrell, Jr, (D-NJ), introduced H.R.1347 to establish and implement concussion management guidelines for school aged children. The Concussion Treatment and Care Tools Act of 2009 or the ConTACT Act of 2009 establish concussion management guidelines that address the prevention, identification, treatment, and management of concussions in school-aged children, including standards for student athletes to return to play after a concussion; and (2) convene a conference of medical, athletic, and educational stakeholders to establish such guidelines. The Congressional Brain Injury Task Force once again held a successful Brain Injury Awareness Day in March promoting awareness and education. A House Resolution was adopted in recognition of Brain Injury Awareness Month. 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.
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.
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