BR A IN INJURY professional vol. 9 issue 3
The official publication of the North American Brain Injury Society
Special Issue on Neurotechnology
Understanding the Resilient Brain: Using Advanced Neuroimaging Technology to Measure and Modulate Brain Behavior after Injury The Sheltering Arms iWALK™ Program A Novel, Evidence-Based Gait Neurorehabilitation Program Case Studies in Adaptive Technology after Brain Injury Developing Assessment and Intervention Technology in a Community Integrated Setting Serving Military Service Members with TBI: New Research Initiatives Funding of Assistive Technology for Brain Injury in the United States How Can We Best Match the Person with a Brain Injury with the Most Appropriate Technology Support? BRAIN INJURY PROFESSIONAL
1
Lakeview Affiliated Programs To make a referral, call 1-800-473-4221 www.lakeviewsystem.com
n Specialty Acute Care Hospital Medically Complex & Coma Recovery Available in Wisconsin
n Neurobehavioral &
Rehabilitation Programs Children, Adolescents and Adults Available in New Hampshire, Pennsylvania, and Wisconsin
n Special Education Accredited Schools Grades 1-12, Early Intervention Programs The Lakeview School in New Hampshire & The Hillside School in Wisconsin
n Community Integrated Programs Homes, Assisted Living & Supported Apartments Available in Wisconsin & New Hampshire
n Lakeview Rehab at Home Comprehensive Home Health Services
FACILITIES Effingham, NH Waterford, WI Lewistown, PA
SUPPORTED LIVING Westfield, WI Freedom , NH Center Ossipee, NH Belmont, NH
CERTIFIED RESIDENCE Farmington, NH Wolfeboro, NH
REHAB AT HOME New England Wisconsin (opening 2012)
SATELLITE OFFICES New York, NY Austin, TX Cape Cod, MA Portland, ME Dover, NH
contents departments
BRAIN INJURY professional vol. 9 issue 3
The official publication of the North American Brain Injury Society
north american brain injury society
19 Brain Bytes
chairman Ronald C. Savage, EdD Immediate Past Chair Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family Liaison Skye MacQueen executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Megan Bell graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes
33 Literature Review
brain injury professional
4 Editor in Chief’s Message 6 Guest Editor’s Message
33 Non-profit News 38 Legislative Roundup
publisher J. Charles Haynes, JD Editor in Chief Ronald C. Savage, EdD Editor, Legislative Issues Susan L. Vaughn Editor, Literature Review Debra Braunling-McMorrow, PhD Editor, Technology Tina Trudel, PhD founding editor Donald G. Stein, PhD design and layout Nikolai Alexeev advertising sales Megan Bell
EDITORIAL ADVISORY BOARD
features 8 Understanding the Resilient Brain: Using Advanced Neuroimaging
Technology to Measure and Modulate Brain Behavior after Injury by Michael R. Borich, DPT, PhD and Lara A. Boyd, MPT, PhD 10 The Sheltering Arms iWALK™ Program A Novel, Evidence-Based Gait
Neurorehabilitation Program bY Matthew Wilks, PT, MSPT, NCS and Nathan D. Zasler, MD, FAAPM&R, FAADEP, DAAPM, CBIST 14 Case Studies in Adaptive Technology after Brain Injury by Deepa Thimmaiah, MS, OTR 16 Developing Assessment and Intervention Technology in a Community
Integrated Setting Serving Military Service Members with TBI: New Research Initiatives Tina M. Trudel, PhD, Jeffrey T. Barth, PhD, ABPP-CN, Daniel Plotnick, MS 22 Funding of Assistive Technology for Brain Injury in the United States By Anna Schmidt, Marcia Scherer, PhD, MPH, FACRM, and Eileen Elias, MEd 28 How Can We Best Match the Person with a Brain injury with the Most
Appropriate Technology Support? by Marcia J. Scherer, PhD, MPH
Michael Collins, PhD Walter Harrell, PhD Chas Haynes, JD Cindy Ivanhoe, MD Ronald Savage, EdD Elisabeth Sherwin, PhD Donald Stein, PhD Sherrod Taylor, Esq. Tina Trudel, PhD Robert Voogt, PhD Mariusz Ziejewski, PhD
editorial inquiries Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Website: www.nabis.org Email: contact@nabis.org
advertising inquiries Megan Bell Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900
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. © 2012 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com
BRAIN INJURY PROFESSIONAL
3
editor in chief’s message
Ronald Savage, EdD “I not only use all the brains I have, but all that I can borrow.” --Woodrow Wilson Several years ago, a young man I was working with said to me, “If only the technology was good enough and I could just plug a computer chip into my brain and use it like other people strap on an artificial leg. Man, would that make my life so much easier. No offense Doc, but these compensatory strategies we’re working on really suck!” Of course I got a good laugh out of that statement, but, in fact, several brain research and development projects right now are investigating programs that can organize photographs, paper records and other materials from the brain into a programmable computer
that a consumer can run. Just imagine… an external computer that could support an individual’s life history. Neuro-Researchers are even now working on systems to record every conversation that a person has and send it to a computer database via text. Not to even mention all the new “energy booster” drinks that promote the effect of various neuro-chemicals on the brain such as Ltheanine which appears to work particularly well in combination with caffeine to help attention and concentration. In Arthur C. Clarke’s science-fiction novel 3001, people 1000 years in the future are depicted as having installed “brain caps” (we already have. EEGs are now being used to control simple electronic devices). The so-called brain gate chip uses 100 hair-thin electrodes to monitor brain activity in areas associated with muscle control, and then turn those activity patterns into electrical signals to move the person’s muscles. More recent research has even managed to get brain cells to grow onto a computer chip – the ultimate mind-machine interface. Our brain future is sooner than we ever thought and certainly not 1000 years away. Today, we are well aware that Assistive Technology has advanced far beyond the simple tools many of us once relied upon to help individuals with brain injuries. While assistive technology for individuals can be as simple and low-tech as a spiral notebook to help with organization and memory, or small voice recorders on keychains pre -recorded with reminder messages including appoint-
ments, telephone numbers, grocery lists, or prescription refills, many professionals are now teaching individuals how to use their Smart Phones (see list of Apps in this issue) to become virtual brain support systems. In addition, various organizations, like Denver Options and the Colorado TBI Trust Fund, are helping people with brain injuries access and customize assistive technology that helps individuals better manage their daily lives. Dr. Tina Trudel and colleagues have focused this issue upon the use of advanced technology to support people with brain injuries. Areas of support, including cognition, language, memory, problem-solving, physical functions, and information processing are investigated both from a “techie” perspective (Smartphones, PDA devices, voice organizers) and a clinical perspective. NABIS wants to thank Dr. Trudel for “double duty” this year. Not only did Dr. Trudel serve as Guest Editor of this issue of BIP, but she is also the Conference Chair for our annual event. Dr. Trudel has long been recognized for her expertise and leadership in our field, but for those of us who really know Tina, she is also a remarkable person full of heart and soul. Dr. Trudel is a true gift to all of us and the hundreds of individuals with brain injuries that she has helped over the years. NABIS thanks her for a wonderful issue of BIP and for organizing an outstanding professional conference. Ronald Savage, EdD
concussion certification A new Concussion Certification program has been approved for practitioners in physical therapy, athletic training, exercise physiology, neurology, neuropsychology, and primary care. This competency-based, online educational program (six hours) consists of a series of videos followed by an examination, sample clinical algorithms, and resource tools (sample evaluations, treatment plans, return-to-play protocols). Contact: www.concussionhealth. com for more information. 4
BRAIN INJURY PROFESSIONAL
“The right treatment, at the right time, in the right setting, with the right professionals” The Tree of Life Team Tree of Life builds upon the strengths of our clients with compassion, innovation and expertise. For more information, please contact us at: 1-888-886-5462 or visit our website at: www.Tree-of-Life.com
Transitional Neurorehabilitation and Living Assistance for Persons with Acquired Brain Injury Tree of Life Services, Inc. 3721 Westerre Parkway • Suite B • Richmond, VA 23233 BRAIN INJURY PROFESSIONAL 5
guest editor’s message
Tina M. Trudel, PhD
For the last few years, I have been privileged to serve on the International Scientific Advisory Board of the World Congress of Neurotechnology, which met in Rome in 2010 with representatives from around the world, presenting papers on topics that at times seemed more science fiction than science. The World Congress is now the World Association of Neurotechnology and has evolved as an international on-line forum (www.waneurotech.org) covering the areas of neuroresearch, neuropsychiatry, neuroplasticity, neurooncology and neurosurgery. Myself and others have sought a space for applied technology and neurorehabilitation within this realm of high-tech, heady science. In this arena, technology transfer, venture capital, clinical trials, government approvals and intellectual property rights are as passionately discussed as any scientific findings, and clinical rehabilitation applications share the screen with nanobots carrying designer molecules across the blood brain barrier! Technology is evolving far more rapidly than most of us realize. In 2010, I was pleased to present clinical technology in applied neurorehabilitation pilot studies. These included projects with colleagues at the Defense and Veterans Brain Injury Center-Charlottesville/University of Virginia on selection of GPS systems for community orientation (now completely
6
BRAIN INJURY PROFESSIONAL
outdated); driving simulation (already into its next generation) and Lakeview’s pilot study in use of computerized instruction technology (being further developed and noted in this issue). Other presenters at the 2010 World Congress of Neurotechnology were addressing early stages of device development, computerized assessment, use of advanced MRI, EEG, PET scan and related techniques, neuromodulation via application of transcranial magnetic stimulation, therapy avatars, robotic treatment, etc. Now in this BIP issue, articles from Drs. Michael Borich and Lara Boyd of the University of British Columbia Brain Behaviour Lab, Matt Wilks and Dr. Nathan Zasler’s review of the iWALK system, Deepa Thimmaiah on individualized functional applications of diverse technology, and Trudel, Barth and Plotnick on instructional technology and computerized concussion biomarkers, all shed light on current state of the art applications and research advances in progress. The science and interventions in these articles are a leap forward from 2010 – yet soon this information, too, will seem antiquated! It is easy to get swept away by technology, its rapid change coming at us from all directions as we pass through time tethered to our various devices. Scholar Bruno Latour of the Paris Institute of Technology writes eloquently in his essay on morality and technology, “Technology is always limited to the realm of means, while morality is supposed to deal with ends.” And so in this whirlwind with the day to day invasion of technology into every arena of life, this BIP special issue also considers how as thoughtful, ethical clinicians, we participate in the process of meaningfully applying technology in a person-centered manner (Dr. Marcia Scherer’s article on matching person to technology) and how more broadly, applied technology progresses in our healthcare, resource, information, public policy and economic contexts (Schmidt, Scherer & Elias). Technology holds great promise for all of us, with or without brain injury, to master its growing potential and enhance our
lives across various domains. However, in that process, we must exercise caution that technology does not master us. Ultimately, quality of life hinges on relationships, a sense of accomplishment and productivity, personal empowerment, choice and control, enriching experiences, moments of awe and wonder, and so many other things that technology can either impede or enrich, depending on its implementation. Further, there is always the risk that for every amazing new technologically advanced device, program or treatment that emerges to assist persons with TBI in rehabilitation and community integration, the general public’s use of technology to interact and communicate may further isolate people from one another, a phenomena that can have uniquely adverse impacts on individuals post-TBI. No modern day Luddite, I write this on my laptop, with music from my iPhone, emails streaming on my iPad, and grounded in a world of apps that guide my life: work (videoconferencing, word processing, spreadsheets, databases, sharepoint); travel (booking flights/hotels/cars, rating food, finding toilets, GPS); home (banking, bills, recipes, scheduling); health (calorie counter, fitness monitor, electronic record); activities (weather, tide table, google, events blogs, plant guide); and relationships (facebook, linkedin, email, face time, photo/file sharing). While quantitatively I have experienced significant growth in speed, automation, and productivity, I am not always sure that such changes translate to ‘quality of life’. Surely my greatest joy of the week was walking the woodlands with my family, quietly conversing and picking wild blueberries – slowly, by hand. My many thanks to the outstanding contributors featured in this special issue, and to NABIS, for selecting and supporting a focus on technology in brain injury rehabilitation. Tina M. Trudel, PhD
Latour B, Morality and Technology: The Ends of the Means, Theory, Culture & Society, 19(5-6): 247-260, 2002.
Understanding the Resilient Brain: Using Advanced Neuroimaging Technology to Measure and Modulate Brain Behavior after Injury
by Michael R. Borich, DPT, PhD and Lara A. Boyd, MPT, PhD
Up to 85% of the approximately 300,000 Canadian stroke survivors experience hemiparesis, and between 55% and 75% of these individuals suffer from functional limitations (Heart and Stroke Foundation. 2009), which are associated with diminished healthrelated quality of life, for years following stroke (Gresham et al., 1995). Recent advances in stroke treatment have stressed early intervention, greatly reducing the risk of mortality after stroke (Gusto, 1993). Yet, development of treatments aimed at improving function after stroke has failed to keep pace. Rehabilitation specialists do not yet understand how best to help the brain recover from the damage after stroke. The importance of this issue is underscored by recent work from the Brain Behaviour Laboratory (BBL) at the University of British Columbia showing that population-based quality of life for Canadians with stroke declined from 1998 to 2005 (Edwards et al., 2010). In this work, we determined that declines in health related quality of life in the Canadian population were associated, in part, with increases in the proportion of individuals with impaired motor function post-stroke. Together the high incidence, increased survival rates, and decreased quality of life following stroke demonstrate a critical need for the improved understanding of brain recovery after stroke. Whether caused by stroke, traumatic brain injury or other causes, relatively little is known about how the brain recovers from, and compensates for damage. In the absence of an understanding of the neurobiological bases for recovery, rehabilitation and brain injury prevention strategies have been developed following a variety of intuitive and unsubstantiated methods. Taken together, our work in the BBL seeks to understand how to best stimulate positive neuroplasticity and motor learning in the damaged brain. Logically these efforts should help lead to the development of new, scientifically grounded approaches to prevent brain injury and facilitate recovery. Work of the Brain Behaviour Laboratory
The BBL is dedicated to furthering the knowledge of brain be8
BRAIN INJURY PROFESSIONAL
havior, specifically towards expanding our understanding of what therapies positively alter patterns of brain activity after injury or with neurological disease processes. The lab is comprised of dedicated students and staff who in collaboration with senior scientists and volunteers from the community work to answer these important questions in relation to optimizing rehabilitation techniques. Research in the BBL examines the relationships between brain function and behavior after central nervous system damage. The work conducted in this laboratory essentially seeks to integrate two fields of study: the neurobiology of motor learning and the neural science of recovery from stroke or other injuries to the brain. The research focus is to understand how best to stimulate neural plasticity to facilitate motor learning and recovery of function after stroke or other forms of acquired brain injury. To do this, the BBL utilizes a number of advanced neuroimaging techniques including quantitative magnetic resonance imaging (MRI), transcranial magnetic stimulation (TMS), functional MRI, diffusion tensor imaging (DTI) and electroencephalography (EEG) to comprehensively characterize both the anatomy and physiology of the human brain. Functional MRI and DTI Research
Using quantitative MRI techniques, we are able to probe structural characteristics of the healthy and damaged brain. For example, by capitalizing on the diffusive properties of brain tissue using DTI, we are able to characterize the microstructural status of brain regions. Using DTI, we are now able to quantify disruptions in the microstructural integrity of white matter fiber tracts and relate these disruptions to impairments of motor function and learning after injury. Recent work from the BBL has characterized changes in white matter associated with developmental coordination disorder (DCD) (Zwicker et al., 2012). The purpose of this study was to explore the integrity of motor, sensory, and cerebellar pathways using diffusion tensor imaging (DTI) in children with and without
DCD. We found microstructural changes in motor and sensory white matter fiber tracts in children with DCD as compared to their healthy counterparts. These data indicate that changes in both motor and sensory tracts may be implicated in DCD. Additionally, we have employed DTI to consider structural changes in the stroke-damaged brain. First, we established which DTI analyses methods yielded valid and reliable data following stroke (Borich et al., 2012). Further, we related changes in white matter microstructure to motor control and motor learning changes following stroke. These findings indicate that microstructural status of the primary motor output tracts bilaterally is closely associated with both motor function and motor learning in the chronic phase of stroke recovery. These findings suggest that white matter structure may be an important predictor of response to rehabilitation following stroke. Ultimately, the main goal of work conducted in the BBL is to understand how learning is operationalized by the damaged brain to reconceptualize rehabilitation interventions. Damage to the adult brain results in a variety of structural and physiological changes. Despite this, we, and others, have demonstrated that the capability for motor learning is disrupted but not abolished by brain damage. Recently we illustrated a compensatory network of brain activity in individuals with chronic stroke as they are learning a continuous motor task using fMRI (Meehan et al., 2011c). In this paper we showed that individuals with stroke relied on the dorsolateral prefrontal cortex for motor learning after stroke while aged matched controls utilized a different brain region (the dorsal premotor cortex) and showed larger change and less error during learning. These results illustrate the ability of individuals with stroke to learn tracking tasks and details shifts in functional brain networks using fMRI that support learning after brain damage. Transcranial Magnetic Stimulation
It is now possible to non-invasively index and modulate regional brain activity using TMS techniques. TMS can be used to measure changes in cortical excitability thought to be mediated by neurotransmitter behavior at the neural synapse. Our lab has used this technique to reveal subtle changes in brain physiology following a transient ischaemic attack (TIA) that is associated with risk of stroke after a TIA when no overt pathology is observable using conventional brain imaging techniques (Edwards et al., 2011). This information may provide an important biomarker of subtle brain injury to assess future stroke risk and aid in therapeutic management. When TMS pulses are applied repetitively (rTMS), brain activity can be transiently inhibited or facilitated and many have future potential as an adjunctive to standard rehabilitation. Recently, we validated that experimentally reducing primary sensory cortex function using rTMS releases inhibition on the contralateral cortex and serves to increase contralateral cortical excitability (Meehan et al., 2011b). To experimentally verify models that demonstrate interhemispheric inhibition and suggest that the excitability of one hemisphere may be increased by inhibiting the contralateral side, we used rTMS to transiently reduce the function of the left primary sensory cortex. Using EEG to index contralateral, rightsided primary sensory cortex activity, we noted increased baseline cortical excitability at rest. These data illustrate that interhemispheric inhibition operates not just between motor cortices, as has been previously described, but also between sensory cortices.
This ability to transiently modulate regional brain activity may have important implications for enhancing response to rehabilitation. We currently have experiments underway to evaluate the pairing of rTMS with motor skill training for individuals with chronic stroke to determine if there is a synergistic effect of combining rTMS with training on amount of motor skill learning. In preliminary work, stimulation of either the contralesional primary sensory cortex or primary motor cortex resulted in greater improvements in motor skill performance compared to a control stimulation condition in individuals with chronic stroke (Meehan et al., 2011a). Current and future work in our lab continues to build upon these promising data by applying multimodal neuroimaging strategies to combine these techniques to better understand the complex interrelationships between brain anatomy, physiology and behavior in the healthy brain and in the brain after injury. Ultimately we anticipate the findings produced in our lab will provide crucial information for the advancement of rehabilitation strategies designed to improve quality of life for individuals with stroke and brain injury. In turn this information may reduce the burden of rehabilitation on the health care system, and further refine our conceptualization of the dynamic modifiability of the brain. References
Borich M, Wadden K, Boyd L. Establishing the reproducibility of two approaches to quantify white matter tract integrity in stroke. Neuroimage 59:2393-2400, 2012. Canada Heart and Stroke Foundation. Tracking Heart Disease and Stroke in Canada. Released 2009. Edwards JD, Koehoorn M, Boyd LA, Levy AR. Is health-related quality of life improving after stroke? A comparison of health utilities indices among Canadians with stroke between 1996 and 2005. Stroke 41(5):996-1000, 2010. Edwards JD, Meehan SK, Levy AR, Teal PA, Linsdell MA, Boyd LA. Changes in Intracortical Excitability After Transient Ischemic Attack Are Associated With ABCD(2) Score. Stroke 42(3):728733, 2011. Gresham GE, Duncan PW, Stason WB, et al. Post-Stroke Rehabilitation. Rockville, MD: U.S. Department of Health and Human Services. Public Health Service, Agency for Health Care Policy and Research, 1995. Gusto I. An international randomized trial comparing four thrombolytic strategies for acute myocardial infarction. New England Journal of Medicine 329(10):673-682, 1993. Meehan SK, Dao E, Linsdell MA, Boyd LA. Continuous theta burst stimulation over the contralesional sensory and motor cortex enhances motor learning post-stroke. Neuroscience Letters 500(1):26-30, 2011a. Meehan SK, Linsdell MA, Handy TC, Boyd LA. Interhemispheric enhancement of somatosensory cortical excitability through contralateral repetitive transcranial magnetic stimulation. Clinical Neurophysiology 122(8):1637-1644, 2011b. Meehan SK, Randhawa B, Wessel B, Boyd LA. Implicit Sequence-Specific Motor Learning After Subcortical Stroke is Associated with Increased Prefrontal Brain Activations: An fMRI Study. Human Brain Mapping 32(2):290-303, 2011c. Zwicker JG, Missiuna C, Harris SR, Boyd LA. Developmental coordination disorder: a pilot diffusion tensor imaging study. Pediatric Neurology 46(3):162-7, 2012.
ABOUT THE Authors
Canada Research Chair and Michael Smith Scholar, Dr. Lara Boyd is a physical therapist and neuroscientist who is leading the effort to understand what therapies positively alter patterns of brain activity after stroke. Her group uses a combination of functional magnetic resonance imaging and transcranial magnetic stimulation to map changes in brain activity. Her studies are among the first to comprehensively examine the patterns of brain activation as they relate to motor learning and parameters of practice after injury to the brain. Dr. Michael Borich is a Heart and Stroke Foundation Focus on Stroke Research Fellow in the Brain Behaviour Laboratory at the University of British Columbia. Dr. Borich holds a doctoral degree in Rehabilitation Science and also a clinical doctoral degree in Physical Therapy, both from the University of Minnesota. His areas of expertise include white matter imaging, transcranial magnetic stimulation, and motor skill learning in healthy individuals and individuals with neurologic injury or disease. BRAIN INJURY PROFESSIONAL
9
The Sheltering Arms iWALK™ Program A Novel, Evidence-Based Gait Neurorehabilitation Program bY Matthew Wilks, PT, MSPT, NCS and Nathan D. Zasler, MD, FAAPM&R, FAADEP, DAAPM, CBIST
The use of neurotechnology in neurorehabilitation has grown rapidly over the last two decades and remains an exciting, albeit controversial approach in neurorehabilitation, including gait retraining following acquired brain injury. Part of the controversy stems from the fact that there are few studies specific to TBI gait training that have examined the use of specific robotic techniques. The studies that do exist have focused on a particular intervention, rather than an integrated use of neurotechnology along with more traditional physical therapy techniques to enhance motor retraining efforts associated with gait. Given the dearth of systematic research on robotic assisted gait training specific to persons with TBI, there is a limitation in our current knowledge relative to optimizing the use of these applications and knowing what works for whom, when, and at what level of intensity following brain insult. What is known is that there are differential population responses to use of neurotechnology for gait training, so what is true for spinal cord injury may not be true for stroke, and what is true for stroke may not apply to Multiple Sclerosis or TBI. As everyone probably knows, clinical practice often lags behind the latest scientific evidence. This delay in timely translation of bench and pre-clinical studies to bedside practice often results in a disconnect between basic and research scientists and clinical practitioners in the trenches. The aforementioned is of particular concern in the area of brain injury neurorehabilitation, where the pace of published animal literature and pre-clinical studies is increasing at a nearly exponential rate and typically ahead of the rate of clinical human research. Additionally, the advances in the application of newer neurorehabilitation techniques including the use of neurorobotics, pharmaco-therapy (i.e., amphetamine use for enhancement of motor recovery) and specialized neuromedical interventions have not been well studied in randomized controlled trials (RCTs), nor have integrated approaches utilizing such techniques been adequately assessed to date. As a result, patients who are recovering from brain injuries may not be offered the most current, evidence based assessments or treatments that may serve to expedite neurorecovery and longer term functional outcome, as well as optimally modulate brain injury related impairment. One area where this intersection of assessment and management issues is maybe most evident is that of gait retraining following TBI and acquired brain injury, in general. 10 BRAIN INJURY PROFESSIONAL
Neuroplasticity Some of the guiding principles for neuroplasticity that are relevant to a discussion of motor and gait retraining after TBI include issues of need for adequate motor experiences to be provided relative to both maintenance and improvement of motor function. Additionally, task repetition and intensity with regards to the motor experience has been shown in both animal and human studies to be directly correlated with the degree of motor improvement as has motor task specificity and salience. Based on the available data, it is also known that skilled learning must be differentiated from repetitive but non-skilled motor activities; and that skill dependent modifications lead to alterations of motor cortex topography consistent with adaptive neuroplastic changes. The role of timing, intensity and nature of interventions relative to promotion of neuromotor recovery, relative to both the expediency of said recovery, as well as its durability have been shown to be important, although the exact parameters associated with each of these has yet to be defined with specificity. Scientific studies have shown that at least in animals, early excessive use of an affected limb following experimental brain injury can result in lesional enlargement and/or increased motor impairment. Animal model research has also shown that neuroplastic related intracellular signaling proteins are disrupted if voluntary exercise is done within the first week post-injury. These types of findings may have implications relative to a potential period of vulnerability for maladaptive effects of motor engagement too early after brain insult. Further research is needed to assess the timing of both adaptive and maladaptive effects in any rational therapeutic design for treatment of motor impairment after acquired brain injury.
Treatment Outcome Prognostication With regards to recovery expectations, there are basic neuromedical parameters that must be considered in the context of looking at who may be an optimal candidate for neuromotor gait retraining. Specifically, it is known that the type of neuropathology associated with the brain injury and the degree of impairment are related to treatment prognosis. Age is clearly also a very important factor as it is has been shown that the degree of neurogenesis, somatogenesis, interhemispheric interactions, axonal sprouting and neuronal ability to tolerate ischemia all decrease with advancing age. Simi-
larly, training parameters necessary to optimally drive neuroplastic changes in the brain may vary with age; that is, older persons may require more intensive, longer treatment sessions. Other factors to consider in gait retraining after TBI include imbalance (regardless of origin); excessive patient weight; orthopedic issues including degenerative joint disease and residual limb issues as relevant; neuroorthopedic issues including myostatic contractures and heterotopic ossification; tonal abnormalities such as hypertonia, hypotonia, dystonia, spasticity and rigidity); ataxia, and other movement disorders; and sensoriperceptual impairments, among other conditions.
Integrated Evidence Based Gait Retraining Program Philosophy and iWalk The potential components of an integrated gait retraining program should include use of neurotechnology, traditional PT interventions, vestibular and balance assessment and training, gait and motion analysis, and appropriate, multidisciplinary medical management (i.e. physiatry, neurology, neuro-orthopedics, and neurosurgery). An evidence based neurorehabilitative gait retraining program should also include use of evidence based interventions with systematic application of assessment and treatment principles, optimization of patient engagement with provision of maximal intensity and frequency of treatment interventions in a cost efficient (relative to unit functional gain) environment with interdisciplinary involvement by treatment staff with neuro-rehabilitative expertise. It is best to consider a number of factors prior to implementation of research evidence into clinical practice in the context of such programming. Factors to consider would include: • Is there enough evidence to warrant use of the intervention? • Are there potential barriers to using the intervention? • Where did the intervention sit in the current delivery model? • What are the facility specific needs? • What population specific factors exist? • How should interventions be integrated, if at all? • What modifications must be made to the clinical culture in order to accommodate the intervention(s)? • Where does the intervention fit within the context of what is acceptable to the potential payor? In order to address the aforementioned issues, in early 2010, Sheltering Arms Hospitals in Richmond, Virginia began work to create an evidence-based gait recovery program called iWALK™. Although patients with neurologic deficits after ABI/TBI have many physical rehabilitation needs, Sheltering Arms’ first focus was on walking recovery, as this was a primary concern voiced by a majority of patients and their families. The systematic treatment model of iWALK™ is predicated on evidence-based motor learning principles. In the context of examining the extant literature as it relates to motor retraining/reeducation of gait following ABI, it becomes clear that there is limited literature in certain areas and that even where there may be multiple studies examining particular interventions, frequently there is poor agreement in findings across studies. Nonetheless, it is essential to appreciate the underlying motor learning principles which have been consistently upheld over the preceding decades. It is those principles which must drive clinical practice forward and begin building the bridge between bench and bedside. The inherent difficulty facing clinicians practicing in the “real
world” and not an academic research setting is that replication of results from the literature is nearly impossible. While information from the laboratory must be considered, fresh solutions and applications must be sought in the clinic. Consider the following example: Based on recommendations gleaned from the literature, a patient who desires to walk, but cannot, must perform massive repetitions of stepping and experience error in a safe environment. Given a traditional approach to therapy, such training is simply not possible, and, in the absence of other options, less efficacious interventions would likely be applied. By contrast, iWALK™ employs a variety of advanced technologies, which allow the application of proven and emerging principles of motor learning and recovery. Within iWALK™, it becomes possible to intensely train a patient who can walk very little or not at all - and to do so through high repetitions, intensity, and salience all in a safe and protected treatment environment. Expanding upon the example mentioned above, the Zero G® over-ground dynamic body weight support system allows far more aggressive and potentially beneficial interventions than traditional over-ground training when a patient is unable to support their own body weight. Instantly, it becomes possible to take someone who could only walk five feet with the assistance of three people in the parallel bars and, instead, have that same patient walk over-ground, without the need for human physical support, for 500 feet. Additionally, the patient can experience error and loss of balance, and the device can prevent a fall and reset their position. The repetition, implicit learning and manual facilitation allowed by such training would not be possible using more traditional methods.
Advanced Technology and Clinical Practice Guidelines Other devices included in the iWALK™ program include the Lokomat Pro®, NESS L300® foot drop stimulator, Tibion® Bionic Leg, Woodway® split-belt treadmill, RT® FES cycle, Gait Rite®, Balance Master Pro®, and NESS L300 Plus®. These devices can be used separately or in conjunction with one another, as well as in concert with other traditional treatment approaches. The iWALK™ approach illustrates the importance of having the appropriate tools in the hands of expert clinicians such that direct clinical application of evidence-based motor learning principles is possible. However, simply having tools is insufficient to create a practice model which optimizes neurologic and functional recovery. The plan, and clinical guidance related to integration of technologyspecific interventions must be well developed and robust. The unifying structure of the iWALK™ program is a clinical practice guideline (CPG) that provides very specific recommendations to clinicians with regard to their choice of interventions. Following initial evaluation and extensive testing, each patient is categorized based on their unique impairments and functional limitations. The category assignment then leads to intervention-specific recommendations. While diagnosis is given appropriate consideration once interventions are selected, it is the impairment that dictates treatment. This revolutionary structure contributes to the power of the iWALK™ approach and ensures individual management of every patient. The development of an impairment-based CPG based on existing and emerging evidence-based principles represents potential an advancement of the field of physical neurorehabilitation. Naturally, there are always reasons not to do something difficult, but it is precisely the lack of concrete guidance that makes the creation of a CPG so valuable. The CPG represents a concertBRAIN INJURY PROFESSIONAL
11
ed and comprehensive review of available literature, inclusion of validated principles, and enumerates specific applications based therein. This clinical plan can then be studied and tested in a clinical laboratory and further refined. It is this cyclic feedback cycle from plan (CPG) to implementation to result and data gathering to refinement of the plan that makes the CPG so essential to the iWALK™ process and unique in the field of physical neurorehabilitation. The evidence-based recommendations begin with initial assessment and categorization of patients according to an algorithm-driven schema that ensures the most appropriate, efficacious intervention is applied to the right patient at the right time. Further recommendations focus on the specific application of advanced technology and the progression of treatment. Clinical outcomes are captured for every patient in the iWALK™ program and are used to continuously refine the CPG recommendations. Along with an ongoing review of emerging science, this continuous quality improvement (CQI) process ensures that patients in the iWALK™ program receive the care driven by the most current scientific evidence and practice. The goal of the iWALK™ program is to create a coordinated and systematic treatment model that creates an optimal opportunity, as well as environment for gait improvement and increased functional mobility following TBI/ABI and other disabling conditions affecting gait.
Pilot Studies in Progress:
data utilization has helped iWALK™ break new ground in the field of neurorehabilitation and gait retraining. In the future, the distance between bench and bedside will shrink as programs like iWALK™ continue to expand our clinical armamentarium. References
Backus D, Winchester P, Tefertiller C. Translating research into clinical practice: integrating robotics into neurorehabilitation for stroke survivors Top Stroke Rehabil. 17(5):362-370, 2010. Barbay S, Nudo RJ. The effects of amphetamine on recovery of function in animal models of cerebral injury: a critical appraisal. NeuroRehabilitation. 25(1):5-17, 2009. Bonato, P. Neurotechnology in Traumatic Brain Injury Rehabilitation. In N. Zasler, D. Katz & R. Zafonte (Eds.), Brain Injury Medicine: Principles and Practice. 2nd ed. New York: Demos Medical Publishing; 2013:1245-1263. Dobkin B, Duncan PW. Should body weight-supported treadmill training androbotic–assistive steppers for locomotor training trot back to the starting gate? . Neurorehabilitation and Neural Repair. 26(4):308-317, 2012. Kleim, J. Neural plasticity and neurorehabilitation: Teaching the new brain old tricks. Journal of Communication Disorders. 44(5), 521–528, 2011. Moreno, C., et al. Neurorobotic and hybrid management of lower limb motor disorders: a review. Med Biol Eng Comput. (49), 1119–30, 2011. Morone G , Bragoni M , Iosa M , De Angelis D , Venturiero V , Coiro P , Pratesi L , Paolucci S . Who may benefit from robotic-assisted gait training? A randomized clinical trial in patients with subacute stroke. Neurorehabilitation and Neural Repair. 25(7):636-44, 2011. Nudo, R., & Dancause, N. Neuroscientific Basis for Occupational and Physical Therapy Interventions. In N. Zasler, D. Katz, & R. Zafonte (Eds.), Brain Injury Medicine: Principles and Practice. 2nd ed. New York: Demos Medical Publishing; 2013:1134-1148. Papadopoulos CM, Tsai SY, Guillen V, Ortega J, Kartje GL, Wolf WA. Motor recovery and axonal plasticity with short-term amphetamine after stroke. Stroke. 2009 Jan;40(1):294-302. Sullivan, K., & McCulloch, K. Movement Rehabilitation. In N. Zasler, D. Katz, & R. Zafonte (Eds.), Brain Injury Medicine, Principles and Practice. 2nd ed. New York: Demos Medical Publishing; 2013:1149-1162. Tefertiller C, Pharo B, Evans N, Winchester P. Efficacy of rehabilitation robotics for walking training in neurological disorders: a review. J Rehabil Res Dev. 2011;48(4):387-416. Tefertiller, C., et al. Efficacy of rehabilitation robotics for walking training in neurological disorders: A Review. Journal of Rehabilitation Research & Development, 48(4), 2011. Warraich, Z., & Kleim, J. Neural Plasticity: The Biological Substrate For Neurorehabilitation. PM&R, 2(12-S), S208–19, Melissa Banta, PT, DPT working with a 2010.
Sheltering Arms has partnered with Virginia Commonwealth University and initial studies of iWALK™ have focused on feasibility of clinical implementation and response of different segments of the overall patient on the Smart Balance Maste patient population. In order to assess efficacy, patients admitted prior to the start of the iWALK™ program About the Authors are used as a control group. Preliminary findings show outcome Matthew Wilks, PT, MSPT, NCS is Director of Inpatient Therapy at Arms Hospitals in Richmond, Virginia. He is board certified differences that favor the iWALK™ program. Additionally, there Sheltering in neurologic physical therapy, and is a graduate of the College of Wilmay be a LOS range which optimizes motor recovery when using a liam and Mary in Virginia and the Medical College of Virginia / Virginia program such as iWALK™. Future research, and ongoing CQI will Commonwealth University. Mr. Wilks has lectured extensively on neurohelp to refine the CPG in order to optimize the speed and durability logic therapy, stroke, brain injury, and the role of emerging technology. In 2011, he helped to create the iWalk Recovery Center programs at Shelterof recovery.
Conclusions The future will likely bring a greater understanding of (i) what types of adjutant technological interventions work best for specific neurological impairments, (ii) when in the recovery process to provide treatment with combined strategies to optimize gait retraining, and (iii) what combinations of technology best serve as adjutants to traditional therapies and further facilitate neuromedical management, as well as neuromotor recovery of gait. We clearly need to look outside the traditional assessment and treatment “box” to facilitate new ways to optimize gait retraining after TBI/ABI and other neurological disorders. Technological advances including neurorobotics may offer some advantages to facilitate such training; however, their exact role, particularly in TBI care, is yet to be fully elucidated. The unique combination of evidence-based guidelines, advanced technology to implement those guidelines, and robust 12 BRAIN INJURY PROFESSIONAL
ing Arms Hospitals. Nathan Zasler, MD, FAAPM&R, FAADEP, DAAPM, CBIST is the Medical Director for the iWalk gait retraining programs at Sheltering Arms Hospital in Richmond, Virginia. He is also CEO & Medical Director of Concussion Care Centre of Virginia, Ltd., as well as CEO & Medical Director for Tree of Life Services, Inc., an internationally recognized long term care and transitional Neurorehabilitation program in Richmond, Virginia. Dr. Zasler is board certified in PM&R and fellowship trained in brain injury medicine. He is an affiliate professor at the VCU Department of PM&R and an adjunct associate professor for the Department of PM&R at the University of Virginia, Charlottesville. He is a fellow of the American Academy of Disability Evaluating Physicians and a diplomat of the American Academy of Pain Management. Dr. Zasler has published over 150 peer reviewed abstracts and articles, and has authored over 50 book chapters. He has lectured extensively on TBI related neuromedical issues and is internationally recognized for his work in brain injury medicine. He currently serves as the chairperson of the International Brain Injury Association. He is co-chief editor of two peer reviewed international scientific journals: “Brain Injury” and “Neurorehabilitation.” Dr. Zasler was the recipient of the Sheldon Berrol Clinical Service award from BIAA in 2011 and once again recognized by “Best Doctors” that same year.
Canoeing at Vinland’s main campus in Loretto, Minnesota
drug & alcohol treatment for adults with disabilities Vinland Center provides drug and alcohol treatment for adults with cognitive disabilities, including traumatic brain injury, fetal alcohol spectrum disorder and learning disabilities. We make all possible accommodations for cognitive deficits and individual learning styles. Located in Loretto, Minnesota — just 20 miles west of Minneapolis.
(763)479-3555 • VinlandCenter.org BRAIN INJURY PROFESSIONAL
13
Case Studies in Adaptive Case Studies in Adaptive Technology after Brain Injury Technology after Brain Injury
by Deepa Thimmaiah, MS, OTR
Technology is everywhere - cell phones, computers, tablets, apps. But there is so much more to technology below the surface! People can use technology to impact all aspects of life. In my time as an occupational therapist, I have become increasingly aware of the abundance of technology in our everyday lives, and its multiple uses in the world of rehabilitation, not only as a compensatory strategy, an end method of accessing a phone or computer; but as a means of rehabilitation, a way to facilitate and reinforce other therapy techniques. Traditionally, the introduction of basic adaptive technology has been a way to assist people with more severe brain injuries to access a switch in order to make a toy or device activate, cause an annoying buzzer to sound off, or to engage in simple cause-effect tasks with a visual or auditory stimulus as a reward. Technology has grown tremendously since those days. It can now be used to facilitate normalized limb movements, use a computer to search a simplified internet information base or to email a family member, call for help in case of emergency, provide visual, auditory and proprioceptive feedback, support cognitive functions, and the list goes on and on. This article will describe case examples, describe combined stories of actual sessions examining how technology is utilized to impact the rehabilitation and compensation of cognitive, visual, physical, and communication challenges, as well as technology used as a tool to engage people with brain injuries in treatment and to foster return to home and community.
Cognitive Training and Support
Bob, like many teenagers, was attached to his cell phone. Where 14 BRAIN INJURY PROFESSIONAL
he once used his cell phone primarily for texting, given his problems with memory and executive functioning, he now uses his phone for so much more! His occupational therapist helped him set up checklists to get through his morning. Bob remembers some things in his daily routine, but the checklists help make sure he does not forget a few key things that are not ingrained yet as habits. A simple series of checklists is all he needs to make sure he brushes his teeth, shaves, puts on deodorant, has breakfast, puts on shoes, feeds the dog and locks the door before he goes to his first class. Having reminder alarms attached to specific tasks on the checklist ensures that Bob makes it to class on time. At class, keeping up with the lecturer can be a challenge. His speech therapist suggested that he use the voice recorder on his phone to record and then play back the lecture so that he can review the parts of the lecture that pass too quickly for him to process. Bob puts in reminders of when assignments are due into his mobile calendar, and takes a picture of a new face to attach to his contact list so that he can look at an image rather than trying to recall a name when he tries to call his classmates. As part of his home exercise program he plays problem solving, reaction speed and math games such as WereBox and Zuma. He says he still cannot live without his cell phone, and likes using the features he never used before.
Visual Fatigue and Strengthening
Working on eye movements, saccades, scanning, eye hand coordination and speed of reaction can be extremely boring, difficult to do when by yourself, and hard to complete outside of specific therapy time. Luckily, Gordon has a computer at
home. He would love to drive again, but at the moment he is battling a cranial nerve IV injury in the right eye and a mild misalignment on the left. Being able to see the road and maneuver through traffic is a ways off in the future. Gordon is determined to do as much as he can to reach his goal of driving. In addition to vision-based occupational therapy he has been introduced to games to play on his computer such as Plants vs. Zombies, Mahjong Dimensions and Shape Shifter, that help him train his eyes to coordinate more accurately, react faster and increase his visual divided attention. As a compensatory measure for fatigue, his therapist showed him how to change the layout of the computer screen to make the icons larger and easier to see, and how to change the set-up of his email inbox so that it is visually simplified for him to find email. The filters are easy to set up, allow for faster scanning and therefore support more punctual responses to emails and quick deletion of spam. With the help of his therapist and technology Gordon saves his visual energy and works toward his goal of driving.
Physical Function
Once a law student and an avid soccer player, Luis is struggling after a fall at a construction site left him with several broken bones and a traumatic brain injury. Because of his lack of insight and global aphasia, it is difficult for Luis to comprehend the severity of his injuries and the various, typical therapy instructions. If you ask him, as soon as his broken bones heal, he will be fine. It is difficult to communicate the natural and normal movements of the arms and legs through the interpreter. A different approach needed to be tried. Through the use of virtual reality games using the Kinect gaming system and software from the Institute of Creative Technologies, Luis participates in therapy and does not even realize that he is re-learning normalized movements of his arms. Through this system, switches attach to body parts and then to a buzzer box or a radio, inhibiting or facilitating movement in his affected right side. A proximity switch is used to increase his awareness to objects on his right side as well. Through intensive rehabilitation, Luis is now successfully walking out of the rehabilitation unit and meeting his goal of being able to use the bathroom independently. His homework upon leaving the rehabilitation program is to continue to work on the last major area of movement he is having difficulty with, right handed fine motor coordination. Given that much of his family is out of state or out of country, the recommendation is to email them, typing with his right affected hand only, in addition to the putty exercises he has for strengthening. It isn’t his favorite thing to do, but it is vastly improving his fine motor function.
Technology as a Motivator
Susan loves the Greatful Dead. How a 15 year old girl got into the Greatful Dead in the first place, we will never know! She has minimal arm movement and increasing hypertonicity, plus mild bilateral cranial nerve IV involvement. With all of those physical issues working against her, all her frustrations seem to melt away when she can put on her headphones and just rock out. She would love to be able to start and stop the music as she would like, and to turn the television away from the cartoon network from time to time to watch other preferred programs. With a scanning television remote adapted for a more sim-
plified visual display, and a well placed, soft to touch, easy to activate pillow switch, Susan is able to turn her television on and off, and change the channel to access her preferred programs. The set-up for this system is somewhat time and effort intensive, but it allows her to do something, anything, independently. She also is able to use, with practice, a switch adapted cd player where she can start and stop the music as she wants, further motivating and empowering her during this challenging rehabilitation period. Through the use of switches and adapted electronics, she is able to continue to work on the skills her therapists have targeted as critical to her recovery - initiation, arm movement, eye movement, cause-effect practice, all while doing something with personal meaning to her that brings her satisfaction and an experience of control.
Communication
Maria is a poet, a rancher and a dear sister to her family. She had an unfortunate basilar artery occlusion during an orthopedic surgery resulting in a pontine stroke and now primarily communicates through her eyes. She is what is referred to as ‘locked in’. Her biggest priority in life is to be able to express herself not only through email, but through her creative writing. But how do you write with your eyes, especially when your eye movements are affected by nystagmus (involuntary eye movement)? There is little more motivating than communication. In addition to eye movement and tracking exercises, Maria is encouraged by her occupational therapist to use her computer, playing solitaire with a head operated mouse to improve initial movements such as head and eye turning and stabilization. Maria then moves on to reading books online to assist her scanning, and uses an eye tracking device with the free software Dasher to begin to write again. Through trial and error, it is determined that a head operated mouse along with an augmentative and adaptive communication (AAC) device would be beneficial as speaking a full sentence is not in Maria’s near future. With the AAC device, Maria is now able to write, talk, play and share her poetry with the world. These stories demonstrate the vast impact that adaptive technology can have. From a simple switch to an advanced communication device, technology has a profound potential to positively impact the lives of those with brain injuries, even the most severely injured. At the end of an inpatient rehab program, sending a home exercise program for arm function or other activity is common practice for occupational therapists. In my current practice, I have been including home technology exercises as well, a different and potentially even more beneficial home exercise program. Technology is a part of all of our everyday lives, and while it has been slow to develop applications in the brain injury field, it is time we prioritize incorporating technology more thoughtfully and thoroughly into our rehabilitation programs. About the Author
An occupational therapist slightly obsessed with technology, Deepa Thimmaiah, OTR has been at Craig Hospital in Englewood, CO for five years. She plays an integral role in the Adaptive Technology Lab, with a current focus on applications to patients with brain injury. Previously, she worked in acute care settings, nursing homes and in community outreach. Deepa has presented at ACRM, ASCIP and OT Association of Colorado conferences and is a contributor to the multi-center SCI Rehab study. BRAIN INJURY PROFESSIONAL
15
Developing Assessment and Intervention Technology in a Community Integrated Setting Serving Military Service Members with TBI: New Research Initiatives
Tina M. Trudel, PhD, Jeffrey T. Barth, PhD, ABPP-CN, Daniel Plotnick, MS
The Defense and Veterans Brain Injury Program Charlottesville Rehabilitation Program (DVBIC Charlottesville) is a model community integrated rehabilitation site serving military service members with traumatic brain injury (TBI), often with other co-morbidities. This CARF accredited program is affiliated through joint professional relationships with the University of Virginia School of Medicine (UVA), and partnerships with the private sector in the development of research projects designed to enhance assessment and interventions in the field of brain injury. Two new projects in development include use of computer-based learning technologies in partnership with Instructional Systems, Inc. (ISI), and validation of a non-invasive assay to discriminate between mild TBI and Post Traumatic Stress Disorder (PTSD) with Empirical Technologies, Inc. (ETI).
Learning Technology as an Intervention Tool DVBIC Charlottesville’s partnership with ISI commenced following clinical pilot studies wherein ISI’s learning technologies were utilized at a civilian program (Lakeview NeuroRehabilitation Center, NH) and more recently with veterans (Bedford Veterans Affairs Medical Center, MA). The civilian pilot study demonstrated basic safety, feasibility and user acceptance of the ISI courseware within a clinical population of individuals who had experienced moderate to severe TBI and were in the post-acute phase of rehabilitation. This provided a foundation to proceed with further adaptation of the software for TBI applications. Founded in 1973, Instructional Systems Inc. (ISI) is a pioneer in the use of technology to advance teaching and learning in a variety of educational settings, including schools, social service agencies, adult learning centers and places of employment. With this well established platform, and ISI’s interactive multimedia, 16 BRAIN INJURY PROFESSIONAL
computer-based courseware solutions capacity to teach both occupation-specific and basic cognitive skills, the adaptation of modules to TBI rehabilitation is being explored. ISI’s solutions are unique because they use web-based and networking technology to enable instructors and clinical program staff to track participant progress and provide assistance as needed. ISI courseware features computer-based instruction in areas including basic academics, occupational skills training and employability, self-exploration and life skills. ISI courses combine video, audio, animation and other aspects of interactive multimedia to provide users a thorough and meaningful training experience. The learning technologies embody a set of properties intended to maximize users’ learning experience. These include features such as open entry/open exit wherein each training cycle is flexible, enabling users to start at any point in time and continue using the system at any location for as long as they need to reach their goal. Users leaving the system can resume whenever and wherever they are able, with full access to their course histories and prior work. Another key feature for rehabilitation/community re-integration application is that of targeted instruction. Because it records the results of every learning session, the system can track the progress of each participant individually. Additionally, learning programs are fully customizable, to meet the needs of each user. The ISI learning technology system is founded in competency-based instruction. Courses and reports are designed around competencies to ensure participants are building skill portfolios they can document and use in the workplace. Also beneficial for the post-TBI population, learning is self-paced, and users are able to work in a private, non-judgmental environment designed to encourage those who have lost prior skills or have not had success in traditional educational environments. Regarding scalability, the
technology is expandable and project trainers are skilled in helping local site staff to accommodate fluctuating numbers of participants as often occurs in treatment settings. The software also allows for clinician customization, providing for specific programs for users by identifying components from the different course/ function areas. Additionally, as a web-based product, online tools, including help features, calculators, tutorials, spell check, rulers, notebooks, glossaries, word processing and progress reports, are integrated into the software. One of the more innovative features of ISI learning technology is the management system which allows for real time and on-going clinician involvement and oversight from any location. As participants complete training sessions, their progress is automatically transmitted to a central database. The system allows authorized users, such as project administrators and clinical staff, to track the progress of many users at once and allocate their time to participants in need of extra help. The management system provides data reports on user enrollment, demographics and performance. It can also be used for instruction management and real-time progress analysis, as well as to conduct daily usage tracking, remote electronic mentoring and competency-based branching. Other key features of the system include diagnostic reports, continuous accountability, information security, extensibility and flexibility. In addition to success in a variety of social service, school and workforce development settings, ISI’s courseware and programs have been successfully adapted for use by the military in the past. In the National Guard’s Professional Education Center in Little Rock Arkansas, an ISI computer lab is helping hundreds of Army National Guard enlistees meet their GED enlistment requirements. ISI develops the content of its courseware in conjunction with leading academics and pedagogues, nationally renowned vocational educators and subject matter experts, including in the field of TBI. As a development model, the success of the Army National Guard’s GED Plus program is the product of ISI technical ingenuity, the experience of leading academics and educators and the exacting standards of the National Guard’s Professional Education Center. With input from leaders in the field, ISI is developing applications based on proven computer-based learning technology, that focus on community re-entry and vocational rehabilitation needs of veterans separating from military service. As noted in the VA pilot project summary (O’Connor & Mueller, 2012), the large number of returning veterans, high rate of traumatic brain injury (TBI), and level of vocational impairment make it critical to determine which treatment elements and models of service delivery are most effective to assist veterans with TBI to return to work. The goal of this pilot clinical trial involving ISI learning technology is to evaluate the efficacy of adding a multicomponent neurocognitive intervention to standard Supported Employment (SE) in a sample of veterans with mild TBI seeking to return to community employment. The VA research team believes that the addition of adjunctive neuropsychological treatment services in the form of a multicomponent neurocognitive intervention will enhance standard SE in terms of employment outcome as well as treatment compliance and quality of life. The treatment will last for 16 weeks and represents an integration of supported employment, computer-based cognitive rehabilitation, and psychoeducation. Participants meet individually with a neuropsychologist and are taught compensatory strategies to help manage cognitive difficulties in the occupational environment. Veterans are also taught
skills to recognize and control unhelpful behaviors at work, deal with negative emotions, and foster positive relationships among co-workers and employers. Veterans are given laptops with the ISI work readiness modules, which are incorporated into the sessions and assigned homework in between the office sessions. The content of those modules is designed specifically to meet the training and rehabilitation needs of veterans with TBI. This Bedford VA project, entitled ‘Supported Employment Success for Veterans with TBI’, is under the direction of Maureen O’Connor, PhD and Lisa Mueller, PhD. If successful, this new intervention could be used widely to increase the number of these veterans transitioning successfully to community employment. Final results of this study are anticipated to be presented at this year’s meeting of the American Psychological Association. DVBIC Charlottesville is presently developing its own research initiative utilizing ISI software. The aims of this research are to assess the effectiveness of computerized instructional tools as an adjunct to standard community integrated brain injury rehabilitation, to examine service members’ experiences and satisfaction utilizing computerized intervention tools, and to inform participant instructional tool selection to maximize potential benefit. At present, DVBIC Charlottesville program participants have had open access to ISI software among other computerized tools. Technical aspects of implementation are operational and opportunities for enhancement of the modules have been identified. Further module development, formalization of participant recruitment, and identification of functional and vocational outcome assessment measures for an expanded project building on the Bedford, VA pilot study, are all in process.
Biomarkers in Diagnosing TBI and PTSD In response to an Army Small Business Technology Transfer Program RFP requiring university collaboration, ETI (an engineering firm) and UVA, partnered to develop tools to differentiate between mild TBI and PTSD using neurobiologically based biomarkers. This research project, entitled ‘Non-Invasive Assay to Discriminate Between Mild TBI and PTSD’ is a multi-center study under the direction of Dr. Jeffrey Barth at DVBIC Charlottesville. Initially, cranial nerve focus was viewed as a primary approach, then expanded upon in examining the literature on differences between psychological and concussive issues, wherein the measure of visual tracking was evident in the concussion literature (but not for PTSD), as well as the measure of postural stability wherein imbalance was associated with concussion in athletes, but again was not associated with PTSD (Guskewicz et al., 2001). The engineering group at ETI developed two pieces of technology that can be hardened and taken to the battlefield: A pressure plate connected to a laptop computer that measures balance/ postural stability, and goggles that serve as an eye tracking headset with an infrared sensor under each eye that tracks movement. Prototypes have been built that are reliable and can withstand needed military tolerances. All of the data on visually tracking targets while wearing the goggles and standing on the pressure plate is sent to the laptop. The plate may be stationary or moving, and the ocular tracking may be stationary, moving or rotational, the latter of which tends to be most problematic for persons with concussion. The use of infrared technology versus a camera in the goggle application, is a significant benefit due to much lower cost, durability and output of less data to compress. Thus, the approach to the study as described will utilize a sensorized platform BRAIN INJURY PROFESSIONAL
17
that assesses center-of-mass sway, which has been shown to be a very sensitive tool to assess postural stability, as well as the optical detection system used to measure eye movement based on discrete element infrared limbus tracking. The current study, which has just recently received multiple IRB approvals, involves comparison of these postural stability and visual tracking biomarkers as measured through the described devices, along with neuropsychological measures and PTSD screening. This multi-center effort is a collaboration of ETI, UVA, DVBIC Charlottesville, Fort Lee, Hunter Holmes McGuire Veteran’s Administration Medical Center and Virginia Commonwealth University. The larger aims of this line of research are to investigate a method of quantitative assessment of mild TBI severity; to develop quantitative assessment to ultimately provide support for a decision regarding clearance for return to duty, stay for temporary management or evacuation to a higher care level; and to provide quantitative assessment of recuperation. In a passing traumatic injury case, this would provide assessment metrics over the course of days until the subject is cleared. In more severe cases, the assessment metrics would track the physiological cerebral recovery which would drive the selection of the most effective treatment and drug therapies. At this point, research team training and initial implementation of the research protocol is commencing. References 1. 2.
Guskiewicz KM, Ross SE & Marshall SW Postural stability and neuropsychological deficits after concussion in collegiate athletes. Journal of Athletic Training, 36(3): 263–273, 2001. O’Conner, M & Mueller, L Supported Employment Success for Veterans with TBI. Download 08/01/2012: www.mirecc.va.gov/visn1/research/current_cer.asp
aBOUT THE AUTHORS
Tina M. Trudel, PhD is President/COO of Lakeview NeuroCare, Lakeview Care Partners and Lakeview Rehabilitation Centers & Specialty Hospitals, national leaders in rehabilitation, neurobehavioral treatment, community services and medically complex care. A neuropsychologist by profession, she is an Asst. Clinical Professor in the Department of Psychiatry & Neurobehavioral Sciences, University of Virginia Medical School and also serves as the Research coordinator for the Defense and Veterans Brain Injury Center Charlottesville Rehabilitation Programs. Dr. Trudel is on the national board of directors for NABIS and BIAA where she was honored with their 2008 Founders Award for her work and advocacy in the field of brain injury. Jeffrey T. Barth, Ph.D., ABPP-CN, is the John Edward Fowler Professor and Director of the Brain Injury and Sports Concussion Institute at the University of Virginia, School of Medicine, and is the Senior Scientist, Defense and Veterans Brain Injury Center Charlottesville Rehabilitation Programs. Dr. Barth holds the position of Professor and Co-Director of the Neurocognitive Assessment Laboratory, and Section Head, Neurocognitive Studies in the Department of Psychiatry and Neurobehavioral Sciences, with a joint appointment in the Department of Neurological Surgery at UVA School of Medicine. He is one of the Founders of the UVA Brain Injury and Sports Concussion Institute, is a Fellow of the American Psychological Association and Past President of the National Academy of Neuropsychology and was the recipient of the National Academy of Neuropsychology’s 2005 Distinguished Neuropsychologist Award for lifetime achievements in the field of Neuropsychology. Dr. Barth has authored/edited hundreds of scholarly articles, book chapters and books. He is also a member of the NFL Players Association Concussion Committee and works with the Department of Defense and the American Academy of Neurology on the development of concussion management guidelines. Mr. Dan Plotnick is Vice President of Product Development for Instructional Systems, Inc. Mr. Plotnick began his career with ISI in 1983 as a Systems Programmer when he designed and developed a complete Integrated Learning System. Since that time, Mr. Plotnick has held a series of progressively more responsible positions in engineering and management within the organization. He received his Bachelor’s in Mathematics from Harvard, and Master of Science in Computer Science from the Polytechnic University of New York.
Rebuilding Lives After Brain Injury NeuroRestorative is a leading provider of post-acute rehabilitation and support services for adults and children with brain injuries and other neurological challenges. Our continuum of care and community-based programs include: n
n
n
n
Neurorehabilitation Neurobehavioral Supported Living Transitional Living
n
n
n
n
Host Home/In-Home Day Treatment Outpatient Respite
NeuroRestorative has programs across the country. Visit our website for information on specific program locations. 18 BRAIN INJURY PROFESSIONAL
800–743–6802 referral line
NeuroRestorative.com
brain bytes Google Maps of the Brain?
Check out BrainMaps.org, an interactive multiresolution nextgeneration brain atlas that is based on over 20 million megapixels of sub-micron resolution, annotated, scanned images of serial sections of both primate and non-primate brains and that is integrated with a high-speed database for querying and retrieving data about brain structure and function over the internet. Technology Time Kids between the ages of 8 and 18 spend 11.5 hours a day using technology — whether that’s computers, television, mobile phones, or video games – and usually more than one at a time. That’s a big chunk of their 15 or 16 waking hours. Yet, does that spell doom for the next generation? Not necessarily, according to Dr. Gary Small, a neuroscientist and professor at UCLA. “Young people are born into technology, and they’re used to using it 24/7,” Small said. “Their brains are wired to use it elegantly. The technology train has left. You have to deal with it, understand it, and get some perspective.” The downside of such immersion in technological devices, according to Dr. Small, is that they’re not having conversations, looking people in the eye, or noticing verbal cues. “These are important ‘technologies,’ so to speak, that have evolved over centuries and are tremendously powerful. Texting is an expression of what it means to be human, We love being connected to other people. It’s a very compelling emotional urge, and it’s hard to give up moment to moment.” Brain Technology in the Future Computer engineers have been researching lately and searching for ways in which to document an individual’s life. New memory devices are currently being developed in an effort to blend brain technology with computer technology. Of course this is only a research and development project right now, but hopes of coming up with programs that can organize photographs, paper records and other materials from the brain into a programmable computer that a consumer can run are high. This would work like an external computer that will support an individual’s life history. There are many researchers now working on systems to record every conversation that a person has and send it to a computer database via text. Individuals with memory
problems would definitely benefit from programs such as these. Those who want to pass down family stories may also see the light at the end of this tunnel. For those with memory debilitating deficits and diseases this could be a dream come true. Imagine the possibilities of having all your memories recorded. The use of digital cameras will possibly become non-existent. Having the ability to record pictures of events that your children attend or weddings is something that virtually every parent would consider at some point. Of course there are security and privacy issues to be concerned with. Head Games
A new documentary film, Head Games, directed and Co-Produced by Steve James, who made the renowned basketball documentary Hoop Dreams, has recently been released. Based upon Chris Nowinski’s book Head Games: Football’s Concussion Crisis, the documentary is being screened in several major cities across the US in the next few weeks. Nowinski cofounded the Sports Legacy Institute which aims to advance the treatment and study of brain trauma. Nowinski hopes the documentary increases awareness of the potential significance of concussions, especially in young people, and that “All sports can be reformed to a level that a rational person can be comfortable with. People who think we have this problem under control are fooling themselves.” In the past few years, over 2000 retired NFL players have filed several lawsuits. Nowinski asks “Are we doing enough to protect our children?” ‘Brain Cap’ Technology Turns Thought Into Motion “Brain cap” technology being developed at the University of Maryland allows users to turn their thoughts into motion. Associate Professor of Kinesiology Jose ‘Pepe’ L. Contreras-Vidal and his team have created a non-invasive, sensor-lined cap with neural interface software that soon could be used to control computers, robotic prosthetic limbs, motorized wheelchairs and even digital avatars. “We are on track to develop, test and make available to the public- within the next few years -- a safe, reliable, noninvasive brain computer interface that can bring life-changing technology to millions of people whose ability to move has been diminished due to paralysis, stroke or other injury or illness,” said Contreras-Vidal of the university’s School of Public Health. BRAIN INJURY PROFESSIONAL
19
Innovative Approaches for Real Life Challenges Learning Services programs provide specialized rehabilitation services for adults with acquired brain injuries. Our approach to post acute neuro-rehabilitation allows each individual to acquire the tools necessary to live life on their terms. NATIONWIDE PROGRAMS Neurobehavioral Rehabilitation | Post-Acute Neuro-Rehabilitation Supported Living | Day Treatment Rehabilitation FEATURES Certified Brain Injury Specialists | Transdisciplinary Treatment Teams Functional Based Outcomes | Individualized Programs Network of Experienced Medical Professionals
To learn more about our Centers of Excellence located in the Southeast, Midwest, Rocky Mountains, and Pacific Coast, call 888.419.9955, or visit learningservices.com.
20 BRAIN INJURY PROFESSIONAL
BRAIN INJURY PROFESSIONAL
21
Funding of Assistive Technology for Brain Injury in the United States
Anna Schmidt, Marcia Scherer, PhD, MPH, FACRM, and Eileen Elias, MEd
Assistive Technology for Brain Injury
As clinicians and researchers seek new ways to serve people with cognitive and neuropsychological disabilities, computers and technologies have been incorporated into clinical interventions (Bergman, 1998). For individuals with a traumatic brain injury (TBI) resulting in a physical, sensory, or cognitive disability, the power of assistive technology (AT) can be used to support and enhance quality of life across the age span and diverse disabilities. The term “assistive technology� refers to any piece of equipment that helps an individual with a disability move, communicate, or otherwise function in their daily lives. AT includes simple devices such as Post-it NotesTM to sophisticated computerized equipment, personal digital assistants, computers, reminder tools, and more. The system of services for helping a person with a brain injury and resulting cognitive disability is complex, and more attention is now being given to the supports that can be provided economically and reliably through technology within the rehabilitation continuum. AT can provide life-changing sup22 BRAIN INJURY PROFESSIONAL
port for many people with disabilities, and it is one of many environmental factors that affect the functioning of people with disabilities, their performance of activities, and their pursuit of employment, social interaction, and community interests (Scherer, 2012). Clinicians and researchers have assessed and developed AT for close to 20 years, and rapid advances in information technology have opened new avenues for AT targeted toward persons with a TBI (LoPresti, Mihailidis, & Kirsch, 2004). The number of users of AT and AT services has increased significantly in the last 20 years, as have the number of available products, styles, sizes, features and accessories.
History of Assistive Technology and Legislation in the United States
Over the past century, the federal government has passed a series of laws aimed at making AT available to large numbers of people with disabilities, including individuals with a TBI. In the United States, AT was originally defined in the Technolo-
gy-Related Assistance for Individuals with Disabilities Act of 1988. This legislation, often called the “Tech Act,” was reauthorized in 1994, 1998, and 2004 as the “Assistive Technology Act.” The most current version of the Act was reauthorized in 2010. Under the Tech Act (1998), each U.S. State and territory receives money to fund an Assistive Technology Act Project (ATAP) to provide services to persons with a disability for their entire life span, as well as to their families or guardians, service providers, and agencies and other entities that are involved in providing services such as education and employment to persons with disability. The Tech Act definitions of AT services have been used in most legislation related to persons with disability, such as Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). Other professional groups, private organizations, and non-governmental organizations have set forth their own definitions, policies, and funding for AT services. In the World Health Organization’s International Classification of Functioning, Disability and Health, AT is considered to be an environmental factor. Environmental factors can include access to healthcare and rehabilitation, access to AT and personal assistance, and access to information. Because AT is intended to facilitate health and functioning, lack of resources to find or purchase AT constitutes an environmental barrier. For example, policies that set a low priority on resource allocation for AT serve as environmental barriers (Scherer & Glueckauf, 2005). However, physical environments may be modified to create or increase inclusion by the person across home and community-based settings, particularly through federal policies and efforts made by federal and private organizations.
Federal Laws Related to Assistive Technology
This section summarizes the timeline and federal laws related to AT acquisition by individuals with a brain injury. The Rehabilitation Act of 1973: This landmark legislation expanded rehabilitation services to all eligible individuals through a coordinated comprehensive plan. It required “equality of opportunity through its provisions relating to consumer involvement, emphasis on persons with severe disabilities, creation of the National Institute on Handicapped Research, emphasis on program evaluation and the advancement of civil rights of persons with disabilities.” Section 504 of the Rehabilitation Act, included in the Rehabilitation Act of 1973, applies to all entities that receive federal funds, and the protections in Section 504 can be used to support the legal right to AT across all of those environments. For students with disabilities, this means that schools may need to make special arrangements so that these students have access to the full range of programs and activities offered. Section 504 does not provide individual funding—it is a civil rights statute that requires equal access and equal opportunity to persons with disabilities. Section 508 of the Rehabilitation Act requires that all electronic and information technologies developed and used by any federal government agency must be accessible to people with disabilities. This includes websites, video and audio tapes, elec-
tronic books, televised programs, and other media. Individuals with disabilities may still have to use special hardware and/or software to access the resources. Section 508 does not apply to the private sector or to organizations that receive Federal funds. The Rehabilitation Act Amendments of 1986: These amendments required states to include their plans for rehabilitation engineering services in assisting individuals with disabilities throughout the rehabilitation process (Wallace, 2011). This is the first definition of rehabilitation engineering in a direct relationship to assistive technology as a range of services and devices which can supplement and enhance individual functions (Wallace, 2011). Technology-Related Assistance for People with Disabilities Act of 1988 (and amendments in 1994, 1998, and 2004): Among the broad purposes cited in this act of particular note is the mandate to increase the availability of, funding for, access to, and provision of AT devices and services; increase the capacity of public agencies and private entities to provide and pay for assistive technology devices and assistive technology services on a statewide basis for individuals with disabilities of all ages; and increase the awareness of the needs of individuals with disabilities for ATDs and for assistive technology services; identify Federal policies that facilitate payment for ATDs and assistive technology services; identify Federal policies that impede such payment, and; eliminate inappropriate barriers to such payment. The 1998 reauthorization of the Tech Act included a Title III that provided grants for alternative financing programs to establish state loan financing programs for the purchase of AT. The 2004 amendments called for specific programs that would ensure direct access to technology, such as AT loan programs, device demonstration programs, device reutilization programs, and alternative financing such as low-cost financial loan programs. The Assistive Technology Act of 1998 (AT Act of 1998): The Assistive Technology Act, also known as the “Tech Act,” provides funds to states to support three types of programs: • • •
The establishment of AT demonstration centers, information centers, equipment loan facilities, referral services, and other consumer-oriented programs Protection and advocacy services to help people with disabilities and their families, as they attempt to access the services for which they are eligible Federal/state programs to provide low interest loans and other alternative financing options to help people with disabilities purchase needed AT
Both the AT Act of 1998 and the Assistive Technology Act of 2004, as amended (AT Act of 2004) require that the Secretary of Education submit to Congress a report on the activities funded under the respective acts. Two programs authorized under the AT Act of 1998 and AT Act of 2004 that are monitored and reported on yearly are: •
State Grants for Assistive Technology, which provides grants for state programs designed to increase access to and acquisition of AT for individuals with disabilities BRAIN INJURY PROFESSIONAL
23
•
Alternative Financing Programs, which provide grants to support loan programs that help individuals with disabilities purchase AT devices and services
Americans with Disabilities Act (ADA) of 1990: The ADA prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications. The law has four sections, or “Titles.” Title I requires that employers who have 15 or more employees must offer “equal opportunity” to employment-related activities. Title II applies to state and local governments, and requires that people with disabilities be given equal access to public education, employment, transportation, recreation, health care, and other areas. Title III addresses public accommodations that may be provided by private companies, including private schools, restaurants, stores, hotels, doctors’ offices, and others. Title IV specifically addresses AT, as it requires that telephone companies provide the necessary services to allow people who are deaf or hearing impaired to use telecommunications devices. Education of the Handicapped Act (EHA) of 1975, and Amendments of 1986, 1990, and 2004: This series of legislation [13– 16], specifically identified provisions for the use of AT for students with disabilities. This was the first education law that allocated funding for assistive and special education technology (Wallace, 2011). Individuals with Disabilities Education Act (IDEA): The 1986 amendments of the EHA are commonly known as the Individuals with Disabilities Education Act (IDEA). In 1990, the IDEA first outlined the public school district’s responsibility to provide AT to students with disabilities. IDEA also included the Tech Act’s definition of AT devices and services and a specific statement about the school district’s role: “Each public agency shall ensure that AT devices or services or both, as those terms are defined are made available to a child with a disability if required as part of the child’s special education, related services or supplemental aids and services.”
Funding of Assistive Technology: Federal and Private Efforts
NIDRR The National Institute on Disability and Rehabilitation Re-
search (NIDRR), a component of the U.S. Department of Education’s Office of Special Education and Rehabilitative Services (OSERS), is the main federal agency that supports applied research, training and development to improve the lives of individuals with disabilities. NIDRR supports a wide range of rehabilitation research, development, and other activities designed to assist individuals with disabilities to achieve long-term outcomes such as independence, community participation, employment, and good health. NIDRR research and development activities focus on the complex interaction of personal, environmental, and supporting factors, including assistive technologies. At the individual level, NIDRR has identified in their Long Range Plans for 2013-2017 (NIDRR Proposed Long Range Plans, 2012) to focus on AT devices that enhance the physical, sensory, and cognitive abilities. At the systems level, NIDRR will emphasize applying technology research and development in ways that enhance community integration, independence, productivity, competitiveness, and equal 24 BRAIN INJURY PROFESSIONAL
Assistive Technology Resources Examples of Assistive Technology (AT) and Cognitive Support Technology (CST) Resources (excerpted from Scherer, 2012) Following is a representative, but not comprehensive, sample of key resources for obtaining further information. Assistive Technology Industry Association (ATIA): E-mail: info@ATIA.org; Website: www.atia.org AbilityHub: AT-related website for people with a disability who find operating a computer difficult or impossible. www.abilityhub.com AbleData: A national database of information on thousands of products that are available for people with disabilities. www.abledata.com/ Alliance for Public Technology: A nonprofit membership organization based in Washington, DC. Membership is open to all nonprofit organizations and individuals concerned with fostering access to affordable and useful information and communication services and technologies by all people. www.apt.org Assistivetech.net: An AT website that provides up-to-date, thorough information on AT devices and services, adaptive environments, and community resources. Users can search for AT devices by function, activity, keyword, vendor, or product type. www.assistivetech.net Brain Injury Association of America: Organization that promotes awareness, understanding, and prevention of brain injury through education, advocacy, research grants, and community support services. Brain Injury Network: The first international and U.S. collective advocacy nonprofit organization operated for and by survivors of acquired brain injury. www.braininjurynetwork.org Brain Injury Resource Center: A multidisciplinary team trained in traumatic brain injury that offers consultations, research assistance, case management services, legal services, and in-service training. www.headinjury.com/resources.htm#assitech BrainLine.org: A WETA website funded by the Defense and Veterans Brain Injury Center. www.BrainLine.org Coleman Institute for Cognitive Disabilities: Institute established in 2001 to catalyze and integrate advances in science, engineering, and technology to promote the quality of life and independent living of people with cognitive disabilities. www.colemaninstitute.org/index.php Family Center on Technology and Disability: A national center that offers free information resources on the subject of AT for families, professionals, organizations, and programs and that works with individuals with disabilities. Provides hundreds of assistive and instructional technology resource reviews that have been identified, reviewed, and annotated, as well as fact sheets (such as AT legislation), an AT glossary, AT resources CD, family information guide to assistive technology and transition planning, additional family guides, and newsletters. Supported by the Department of Education’s Office of Special Education. www.fctd.info/ Job Accommodation Network (JAN): A free consulting service designed to increase the employability of people with disabilities by providing individualized worksite accommodations ideas, technical assistance regarding the ADA, and educating callers about self-employment options. JAN is a service of the Office of Disability Employment Policy, U.S. Department of Labor. www.jan.wvu.edu Rehabtool.com: Website that offers a variety of high-tech assistive and adaptive technology products, augmentative and alternative communication devices, computer access equipment, multilingual speech synthesis, and voice recognition software. www.rehabtool.com Virtual Assistive Technology Center. Website provides free, downloadable software for people with disabilities. www.at-center.com
opportunity by mitigating or eliminating barriers found in large social systems such as public transportation, telecommunications, information technology, and the built environment. Following is a list of grant programs, initiatives, and websites funded by NIDRR that support research and development in AT for TBI. 1. Rehabilitation Research and Training Centers (RRTCs): Conduct coordinated, advance research to maximize health and function, promote maximum social and economic independence of individuals with disabilities, and improve rehabilitation methods or service delivery systems. 2. Disability Rehabilitation Research Projects (DRRPs): Emphasize a broad range of research and development projects, training, and knowledge translation on rehabilitation topics. DRRPs have ranged from collecting longitudinal data on TBI, and burn injuries to studying the effects of health care coordination. • Includes Disability Business and Technical Assistance Centers (DBTACs) • Traumatic Brain Injury Model Systems 3. Rehabilitation Engineering Research Centers (RERCs): Conduct programs of advanced engineering and technical research and development activities designed to create technological solutions for enhancing opportunities for individuals with disabilities, solving rehabilitation problems, and removing environmental barriers. RERCs provide for the cost-effective delivery and use of AT devices. 4. Field-Initiated Projects: Address rehabilitation issues for TBI in promising and innovative ways. As the name implies, topics for these projects are chosen by the applicants 5. NIDRR sponsors www.AbleData.com which lists approximately 40,000 AT products, including those relevant to those with BI.
USDA
The National Institute of Food and Agriculture, U.S. Department of Agriculture (USDA), funds an assistive technology program for farmers with disabilities. The project aims to make AT more available to farmers, to ultimately improve their quality of life, and enhance the delivery of agricultural services in a satisfying manner.
AT Exchanges
Several Assistive Technology Exchange Networks aim to make AT devices and services more available to those who need them. A list of the networks in the United States can be obtained at http://www.passitoncenter.org/FindAT.aspx and may help connect people with organizations that offer AT devices that have been donated or discarded in their geographic region. Additionally, some device manufacturers have short- and long-term loaner programs to provide a device for a trial period or while a funding request is being processed.
Conclusion
For individuals with physical, sensory, or cognitive disability as a result of a brain injury, ATs can facilitate independence in accomplishing activities and can often serve as a critical element
Examples of Relevant Cognitive Support Technology Manufacturers and Vendors AbleLink Technologies 618 North Nevada Colorado Springs, CO 80903 (719) 592-0347, fax: (719) 592-0348 info@ablelinktech.com www.ablelinktech.com AbleLink Technologies specializes in making technology easy to use. They take everyday technologies––computers, the internet/email, PDA’s and cellphones––and simplify the user interface so that it is intelligible and straightforward. Using the same design principles, they apply them to areas of need for people struggling with memory, organization, and confusion issues. Attainment Co., Inc. PO Box 930160 Verona, WI 53593 (800) 327-4269, fax: (800) 942-3865 info@attainmentcompany.com www.attainmentcompany.com This company specializes in resources created for individuals with developmental, cognitive, and communicative needs to help foster understanding, learning, and independence, plus encouraging more active participation in classrooms, homes, and communities Cogent Systems, Inc. Ft. Lauderdale, Florida (888) 679-6378 info@cosys.us www.cosys.us This company is focused on the development and implementation of practical assistive technology that enables individuals with cognitive disabilities to achieve greater independence and self-sufficiency in all aspects of life. The company recently released the ISAAC TM system, a small, fully individualized, battery powered and wearable cognitive prosthetic assistive technology system. Being fully individualized and very easy to use, ISAAC is appropriate for many individuals with developmental disabilities, traumatic brain injuries, and acquired brain injuries (including many stroke survivors and individuals with Alzheimer’s disease). Cognitopia Software 99 West 10th Ave., Ste. 397 Eugene, OR 97401 (541) 343-3384, fax: (541) 343-3384 tkeating@cognitopia.com www.cognitopia.com Cognitopia® Software features Picture PlannerTM, a visual calendaring application that provides a simple way to schedule and remember activities. Potential users include: children; individuals with autism, intellectual disabilities, or TBI; elders; or anyone with limited reading and writing proficiency. Easily create activity schedules using pictures with text to speech prompts. Schedules are printable and exportable to handheld devices. Compatible with Mac OS X, Windows XP, and Vista
of successful community living. The capacity to perform various activities through the use of AT enables a person with a disability to participate in desired life situations and can often lead to better health and quality of life outcomes. Over the past century, the federal government has passed a series of laws aimed at making AT available to large numbers of people with disabilities, including individuals with BIs. Although the funding of AT in the United States has fallen within a complex web of traditional and nontraditional funding sources, legislation and federal and private efforts have helped address the BRAIN INJURY PROFESSIONAL
25
increased need for innovative and accessible technology for individuals with BI. These efforts, such as the programs developed by NIDRR and the Tech Act and its amendments, have helped address the challenging barriers many individuals with a disability face in identifying adequate funding for AT. The evolution of technology and increasing need for AT makes collaboration among policy makers, designers, manufacturers, vendors, providers, consumers, and researchers ever more important, as it directly affects how new AT products are funded, brought to the market, and made known to providers and end users. Future rehabilitation services will increasingly be delivered through advanced technology, making the funding and availability of AT a critical component of the rehabilitation continuum for many individuals with a BI. References
Bergman, M. M. (1998). A proposed resolution of the remediation-compensation controversy in brain injury rehabilitation. Cognitive Technology, 3(1), 45–51. Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st century and the state of the states. Washington, DC: American Association on Mental Retardation. Braddock, D. (2002). Public financial support for disability at the dawn of the 21st Century. American Journal on Mental Retardation, 107(6), 478–489. Department of Education, Office of Special Education and Rehabilitative Services. (2012). National institute on disability and rehabilitation research; notice of proposed long-range plan for fiscal years 2013-2017. Retrieved from Federal Register, Government Printing Office website: http:// www.gpo.gov/fdsys/pkg/FR-2012-04-18/html/2012-9365.htm LoPresti E, Mihailidis A, & Kirsch, N. Assistive technology for cognitive rehabilitation: State of the art. Neuropsychological Rehabilitation. 14, 5–39, 2004. Scherer, M. (2012). Assistive Technologies and Other Supports for People with Brain Impairment. New York, NY: Springer Publishing Company, 2012. Scherer M, & Glueckauf R. Assessing the benefits of assistive technologies for activities and participation. Rehabilitation Psychology. 50(2), 132–141, 2005. Wallace, J. (2011). Assistive technology funding in the United States. NeuroRehabilitation, 28, 295–302. Wallace, T., & Bradshaw, A. (2011). Technologies and strategies for people with communication problems following brain injury or stroke. Journal of NeuroRehabilitation, 28, 199–209.
conferences
SEPTEMBER
12-15 – 25th NABIS Annual Conference on Legal Issues in Brain Injury, Miami, FL. For more information, visit www.nabis.org 12-15 – 10th NABIS Annual Conference on Brain Injury, Miami, FL. For more information, visit www.nabis.org OCTOBER 9-13 – ASNR/ACRM 2012 89th Annual Meeting: Progress in Rehabilitation Research, Vancouver, BC, Canada. For more information, visit http://acrm.org/meetings 11-12 – Concussions in Athletes: From Brain to Behavior, University Park, PA. For more information, visit www.hhdev.psu.edu/Concussion-In-Athletics NOVEMBER 7-10 – National Academy of Neuropsychology 32nd Annual Conference, Nashville, TN. For more information, visit http://nanonline.org/ NAN/Conference/Conference.aspx 9 – Denver Options’ 20th Anniversary Gala, Denver, CO, USA. For more information, please visit http://denveroptions.org/20th-anniversarygala 15-18 – 72nd Annual Assembly of the AAPM&R, Atlanta, GA. For more information, visit www.aapmr.org
About the authors
Anna Schmidt is a Research Assistant for the JBS International, Inc., Disability Service Center. She is a graduate of the University of Maryland’s School of Public Health, and has two years of experience providing research and business development support for initiatives relating to traumatic brain injury, mental health, health information technology, and disability. Her work with the Disability Service Center includes qualitative research on healthcare reform effects on individuals with a disability, including individuals with a brain injury, as well as statistical and policy analyses of Medicare and Medicaid reimbursement regulations. Marcia Scherer, PhD, MPH, FACRM is President, Institute for Matching Person & Technology. She is also Project Director, Burton Blatt Institute, Syracuse University and Professor of Physical Medicine and Rehabilitation, University of Rochester Medical Center. She is a past member of the National Advisory Board on Medical Rehabilitation Research, U.S. National Institutes of Health, and Editor of the journal Disability and Rehabilitation: Assistive Technology. Dr. Scherer is a Fellow of the American Congress of Rehabilitation Medicine, the American Psychological Association and the Rehabilitation Engineering and Assistive Technology Society of North America. Dr. Scherer authored Assistive Technologies and Other Supports for People with Brain Impairment and Living in the State of Stuck: How Assistive Technology Impacts the Lives of People with Disabilities. Eileen Elias, MEd is JBS Senior Advisor on Mental Health and Disability. She has more than 35 years of experience as a public health, disabilitybased policy leader, manager, analyst, planner, trainer, and educator with a record of transforming health and human service systems, including traumatic brain injury rehabilitation service delivery, at the international, Federal, State, and local levels. She was Deputy Director, U.S. DHHS’ Office on Disability; Senior Policy Analyst for the DHHS’ Substance Abuse and Mental Health Services Administration Office on Policy, Planning, and Budget; and served as the Commissioner for the Massachusetts Department of Mental Health. 26 BRAIN INJURY PROFESSIONAL
2012
February
2013
28-3 – Santa Clara Valley Brain Injury Conference, San Jose, CA, USA. For more information, please visit http://www.cvent.com/ events/2013-scvbic/event-summary-d3a0791e4b3e4be490722ea9e54600f3.aspx MARCH 22-23 – 8th Annual Brain Injury Rehabilitation Conference, Carlsbad, CA, USA. For more information, visit www.scripps.org/ events/brain-injury-rehabilitation-conference April 18-21 – NORA Annual Meeting, San Diego, CA, USA. For more information, please visit http://nora.cc/2012-conference.html June 16-20 – ISPRM World Congress, Beijing, China. For more information, please visit www.isprm.org
MARCH
2014
19 - 23 – IBIA Tenth World Congress on Brain Injury, San Francisco, California, USA.
TREE OF LIFE SERVICES Physical Therapist Community Based ABI Program
Tree of Life Services, Inc., a recognized provider of transitional and long term neurorehabilitation services, is seeking an experienced physical therapist, preferably NCS certified, looking for a unique, well paying job opportunity in our expanding state-of-the-art community based program. You will be an integral member of a transdisciplinary team and work with nationally recognized neurorehabilitation experts. Applicants should exhibit initiative, creativity, flexibility and good interpersonal skills. Please fax cover letter and resume to Dr. Nathan Zasler, CEO, at: (804) 346-1956 or e-mail to: nzasler@cccv-ltd.com.
TREE OF LIFE SERVICES RECRUITING AN EXPERIENCED NEUROPSYCHOLOGIST FOR OUR EXPANDING COMMUNITY BASED PROGRAM Tree of Life Services, Inc., a recognized national provider of transitional and long term community based neurorehabilitation services, is seeking a NEUROPSYCHOLOGIST. This unique and well paying job opportunity will allow you to be an integral member of a transdisciplinary team and work with nationally recognized neurorehabilitation experts. Applicants should exhibit excellent clinical skills (including assessment skills, differential diagnostic skills and behavioral management skills). familiarity with both “brain and pain� issues and have at least 5 years clinical experience in ABI Neurorehabilitation. We are looking for someone with initiative, creativity, flexibility and great interpersonal skills. Please fax cover letter and resume to Dr. Nathan Zasler, CEO & Medical Director, at: (804) 346-1956 or e-mail to: nzasler@cccv-ltd.com.
Experience You Can Trust in Brain Injury Law. With over 25 years of experience in the area of head and brain injuries, our nationally recognized Stark & Stark attorney Bruce H. Stern devotes himself to obtaining the compensation his injured clients deserve and to providing them with personal guidance to coordinate and promote the healing process.
Bruce H. Stern, Esq. bstern@stark-stark.com
w w w. B R A I N I N J U RYL AW B LO G . c o m Princeton
Philadelphia
Marlton
New York
Newtown
609.896.9060 o r 8 0 0 . 5 3 . L E G A L 993 Lenox Drive, Lawrenceville, NJ 08648 BRAIN INJURY PROFESSIONAL
27
How Can We Best Match the Person with a Brain injury with the Most Appropriate Technology Support? Marcia J. Scherer, PhD, MPH
People who benefit from support while walking can choose among a variety of canes, walkers, and wheelchairs. Those with difficulty hearing can choose among many styles of hearing aids. But what about people with brain injuries? How we can avail of today’s technologies to help them lead lives of enhanced independence and higher quality? Table 1 has taken eight items from the Cognitive Support Technology Predisposition Assessment and paired them with examples of low and higher-tech supports. There are many products available, ranging from everyday technologies (such as smartphones) to specialized devices designed to meet the specific needs of individuals with brain injuries. It is not the availability of products that is the problem, it is knowing which is best for any given person that so often challenges us. While support from appropriately selected technologies can make it possible to pursue employment, education, and involvement in community life, individuals’ views of the value of technologies in accomplishing these objectives, and their predisposition to use one or more, vary considerably. Studies in developed countries have consistently shown that the best match of person and technology occurs when the user is involved in the decision-making and selection of the support to be used (e.g., Federici & Scherer, 2012; Scherer, 2005). For this to be successful, however, there must be an awareness of available options as well as trained professionals willing to involve the consumer and able to make the selected support available. But how does one help the person with a cognitive disability choose support from technology? An emphasis needs to be 28 BRAIN INJURY PROFESSIONAL
placed on empowerment by working with the consumer to express needs and preferences, as well as to discover that person’s best blend of independence, interdependence, and at times, unavoidable dependence. The support selection process is ideally person-centric and based on a partnership of provider and individual with a cognitive disability and/or caregiver. As the individual and provider meet for the purpose of support decision-making and selection, they each bring to this process varying resources, levels of knowledge, expectations, preferences, and priorities. These in turn will affect the assessment of support need both in terms of objective (e.g., functional evaluation) and subjective criteria (what is most desired). Environmental Factors and the Individual with a Cognitive Disability
The individual’s comfort level with support use will be affected significantly by the environments of use as environmental factors will either facilitate use or serve as barriers to use. The perspectives and expectations of others in the environments of use can be influential, especially if the technology inconveniences others. In this fast-paced world, it is often easier for family members or colleagues to just jump in and do a task for the person, than to patiently step aside and watch the individual work to accomplish a task independently. Trials of equipment in actual settings of use involving everyone affected by the technology have proven to be cost effective in the long term, as obstacles and barriers to optimal technology use are identified in time to derive solutions and alternatives. Important resources for individuals with cognitive disabilities
table 1
Examples of Cognitive Supports in 8 Key Areas
Purpose of Intervention1
Technology examples2
1. Seeing
pocket magnifier, computer screen reader (e.g. JAWS, TextAloud)
2. Hearing
captioning, personal amplification system
3. Speech
communication board, voice output communicator
4. Grasping and use of fingers
voice input computer controls (e.g. Dragon NaturallySpeaking)
5. Participating in conversations
cueing devices, speech clarifier
6. Paying attention, not getting distracted
white noise machines, ChatterBlocker
7. Managing appointments, doing things on time
Calvetica calendar for iPhone, vibrating and talking alarm watches
8. Solving problems that come up in daily life
Picture Planner, Voice Activated Personal Data Assistant, WayFinder
1 2
Sample items from the CST PA www.AbleData.com has many more examples
include emotional, physical, and material support from family as well as friends and other significant individuals. Support from others can promote such personal resources as enthusiasm, optimism, self-confidence, a sense of empowerment and a readiness to try new approaches and products.
Sample Questions to Answer about the Environments of Usee • • • • •
Where will I use the support? How will each environment facilitate use? What are obstacles or barriers to my support use? Will I have the on-going training and support I need to optimize use? How may my support use affect others?
Personal Factors and the Individual with a Cognitive Disability
Persons with cognitive disabilities differ as much personally as they do functionally. They (and their caregivers) bring expectations to the support selection process that are internal and external (Scherer, 2005). They carry the expectations of parents, spouses, employers, peers, and society in general that reflect varying values and cultural priorities. Individuals also place expectations on themselves that have evolved from their prior history with support use, the healthcare system and so on. Their particular level of motivation, judgment, and outlook, and many other factors serve to combine in a way that defines each as a unique individual. Their expectations, combined with personality and temperament characteristics, such as the degree of self-determination and self-confidence, or anxiety and depressed mood, serve to determine preferences and priorities. It is important to note that these influences interact and affect one another, and can change with the passage of time and accumulation of experience. Thus, at a given point in time, each person has a predisposition to view support use as being favorable or not for certain purposes and in particular settings or environments. When the goal involves support from technologies, key factors for the consideration are motor skills, cognitive readiness, motivation and psychological readiness for use. For many users of assistive and cognitive support technologies, their devices become an extension of the self, not just to themselves but also to other persons. The device, then, is incorporated into the individual’s identity. But this process can be difficult for some, thus leading to underutilization or non use.
One means of assessing a consumer’s “stake” or perspective is to have individuals rate their difficulties as well as prioritize their own desired outcomes and progress over time in achieving them. This is the system used in the Cognitive Support Technology Predisposition Assessment. In this way, outcomes are measured in terms of changes in the person’s achievement of personal goals (e.g., being able to get to where they want to go) rather than merely by changes in the functional capability to do so. This is an idiographic approach (the person is the unit of analysis and serves as his or her own control) versus a nomothetic one (the person is compared to a group standard). For example, individuals with cognitive disabilities as a group may be characterized as needing memory aids; however, each individual person with a cognitive disability does not have precisely the same memory challenge, and thus does not need the same identical memory aid. However, while individual needs may vary, it is possible to develop standard guidelines to ensure that individual needs and preferences are identified (Federici & Scherer, 2012). The Cognitive Support Technology Predisposition Assessment offers one such standard approach.
Sample Questions to Answer about Preferences and Expectations • • • •
How will use of the support fit with the way I usually do things? How comfortable am I emotionally, cognitively, physically and socially using this support? Do I need additional capabilities to optimize use of this support? Will this support use contribute to my quality of life?
Objective and Subjective Need for Support
Personal factors lead to a predisposition to use support that defines the subjective need for that support, which may or may not match the objective need as determined by providers and measures of functional limitation. The predisposition to use and benefit from support can be characterized by assessing the individual’s preferences and characteristics (for example, current level of subjective quality of life, self-esteem, mood, and attitudes of and support from others). Providers must be especially cognizant of the impact of support use on individuals with new onset disability. The multiple issues that must be addressed by the individual can have an impact on that person’s ability to understand the value of the support and gains that can be achieved from use of it. Given the importance of early support provision, individuals need to come to terms with living with a chronic illness or disability while trying to learn and understand treatment issues and support use. Thus, the views of support use held by a young man with a new TBI are apt to be different from those of a child born with cerebral palsy or an aging person who is a recent stroke survivor. A highly positive outcome of the support decision-making process, therefore, is an individualized intervention that (a) considers the unique individual (including the nature of the disability, age at onset, etc., as well as objective and subjective need), (b) is minimally complex, and (c) is coupled with strategies for on-going encouragement and reinforcement of use as well as for the assessment of changing needs. Support Comparison & Trial use
Trialing the most appropriate support, with essential features included and nonessential ones left to consider at a later point, is a key component of the support selection process. Benefit from BRAIN INJURY PROFESSIONAL
29
use should be achieved with minimum frustration and the shortest learning curve. It is important present consumers with a considered set of choices, as too many can lead to confusion, feeling overwhelmed and anxious, and resistance to making a choice. When comparing and choosing among competing devices (that is, the same basic device but with choice in degree of sophistication, style, size, etc.), three options will provide the person with the opportunity to exercise choice, but not so many options to be overwhelming. Options to compare and trial technologies may vary by the primary facility or agency coordinating the individual’s treatment and rehabilitation. Most rehabilitation facilities have a variety of technology options available and manufacturers and vendors may be willing to loan or rent their products. Peer users of the same or similar technology are another potential resource. When supports have been selected for trial use, such concerns as delivery time, warranties and guarantees, and so on should be discussed with vendors and manufacturers. If the individual finds use of the product too difficult, confusing, or otherwise dissatisfying, then the process of user training, consideration of environmental interventions and accommodations, and product modification is repeated.
Sample Questions to answer: Support Comparison and Trialing • • • • •
Does use of this support reflect my lifestyle, age, personality, priorities and preferences? Have all available options been considered? How well does this support perform for me? Is this support easy to access, use and maintain? Does this support fit with the other supports I’m already using?
Follow-up
Periodic follow-up with individuals after they acquire their support will help to determine the success of the match and whether adjustments need to be made in the person’s skills, environments of use, and/or support features. This also provides the opportunity to discuss the desirability of upgraded or additional supports. Professionals realize that follow-up evaluations of how well consumer needs are met need to become a regular part of the rehabilitation service delivery process as, increasingly, evidence is being requested regarding the quality of service delivery and the success of rehabilitation interventions. There are varied outcomes than can result from the technology selection process (Scherer, 2005): • optimal use under all recommended conditions and situations, • partial use, where it is used in some situation but not others or part of the time, • non-use, where the technology was once used but is set aside perhaps because it no longer needed, • avoidance of use, where use is not even considered, • reluctant use, where the individual uses it but does so with displeasure, • abandonment, or permanently giving up use usually out of frustration or annoyance. The first three categories can be considered a successful outcome of the process if the individual with a cognitive disability reports realization of benefit from using or having used the technology. The last three categories, however, indicate a failure of the process to serve that individual. 30 BRAIN INJURY PROFESSIONAL
Over time, and sometimes a short period of time, consumer capabilities and interests expand or evolve. This can be especially true when they have the most appropriate supports and are able to participate in a variety of roles and events in varied settings. These are key outcomes, as are realized benefits from use of the selected support and the user’s enhanced subjective well-being as a result of use. Unfortunately, such outcomes are not always achieved and consumers discontinue use of recommended technology supports While some technologies are meant to be used for only a short time, premature assistive technology abandonment is costly both in terms of dollars as well as individual and provider time and resources. Outcomes measures are used to demonstrate that particular goals established for an individual have been identified and then achieved. The Cognitive Support Technology Predisposition Assessment has been designed in two version: The Initial Version, to guide the support selection process in all of the areas discussed in this article, and the Follow-up Version to determine use.
Sample Questions for Professionals about the Outcomes of Support Use • • •
Have the individual’s capabilities increased? Does the person report enhanced well-being? Is the individual participating more in desired roles, school or job, and the community?
Conclusion
When we think of the ultimate positive outcome of the service delivery process, we envision a consumer who is satisfied with their use of a recommended device and able to participate in a variety of roles and events where the lack of an appropriate device had been a critical limiting factor. In other words, a positive outcome is where we know that the device and its use have empowered the individual with a cognitive disability. To achieve this is not difficult when 4 key points are kept in mind.
Support Selection 4 Key Points • • • •
Know the resources and where to get information. Identify not only needs, but expectations, preferences and priorities. Use a process to guide and document decision-making. Follow up.
The individual’s life enhancement is the ultimate goal in cognitive rehabilitation: To be more capable, more independent, able to exercise more choice and take advantage of a wide range of opportunities. Technologies can play an important role in the achievement of such outcomes, but will do so most effectively when the user is included in the process of selecting the technologies and is encouraged to express preferences regarding the device’s features.
References
This article has been adapted from: Scherer, M.J. (2012). Assistive Technologies and Other Supports for People with Brain Impairment. New York: Springer Publishing Co. References cited in the text are: Federici, S. & Scherer, M.J. (Eds.). (2012). Assistive Technology Assessment Handbook. Boca Raton, FL: CRC Press. Scherer, M. J. (2005). Living in the State of Stuck: How Assistive Technology Impacts the Lives of People with Disabilities, Fourth Edition. Cambridge, MA: Brookline Books. (First Edition published in 1993; Second in 1996; Third in 2000).
BRAIN INJURY PROFESSIONAL
31
Holding Standards High. Clinical Director ResCare Premier Texas, a post-acute residential rehabilitation program, is seeking a Clinical Director to lead an interdisciplinary team, introduce innovative, evidence-based treatment strategies, develop and monitor treatment programs, implement individual and group therapy, and provide brain injury education to participants, families, and staff. In addition, the Clinical Director will advocate for persons with brain injury in legislative and community activities. ResCare Premier’s treatment settings are within a 15-mile radius of San Marcos, a university community located midway Austin and San Antonio, Texas. Job Requirements: Doctoral degree with experience in neuropsychology. Must be a licensed psychologist in the state of Texas. Salary: Negotiable www.rescarepremiertexas.com Contact Information Patrice Gribbon, Human resources Manager Email cover letter and resume to pgribbon@rescare.com or fax to 512/396-2024
For over three decades Beechwood’s interdisciplinary brain injury program has been competitively priced and is nationally recognized for its comprehensive community-integrated approach. As a not-for-profit rehabilitation program, Beechwood has demonstrated that it is possible to provide state-of-the-art treatment at a reasonable cost to the consumer.
Services include: • Physical, occupational, speech, language and cognitive therapies and psychological counseling • Case management • Medical services including on-site nursing, neurological, physiatricand psychiatric treatment • Vocational services from sheltered employment through to community placement • Residential services on a main campus, in community group homes and supported community apartments • Outpatient services
A COMMUNITY-INTEGRATED BRAIN INJURY PROGRAM An affiliated service of Woods Services, Inc • Program Locations in PA 1-800-782-3299 • 215-750-4299 • www.BeechwoodRehab.org Beechwood does not discriminate in services or employment on the basis of race, color, religion, sex, national origin, age, marital status, or presence of a non-job related medical condition or handicap.
Ivy Street School in Brookline, MA
Comprehensive Residential and Day School (ages 13-22) Post-Secondary Transitional Program (ages 18-22)
Expertise in brain injury Individualized employment opportunities for students Focus on teaching self management and executive functioning skills Health, hygiene, and safety skills Relationship and social skills Family support www.ivystreetschool.org 32 BRAIN INJURY PROFESSIONAL
literature review Assistive Technologies and Other Supports for People With Brain Impairment Marcia Scherer, PhD, MPH, FACRM Springer Publishing Pub. Date: 12/2011 400 pages,Softcover ISBN-13: 9780826106452 Marcia Scherer in her book “Assistive Technologies and Other Supports for People with Brain Impairment”, uses the World Health Organization’s International Classification of Functioning, Disability and Health (ICF, WHO 2011) as a framework for developing an assistive technology support selection model that matches persons with brain impairment to complementary technologies. The model is a person-centered approach that is sensitive to each person’s unique abilities and difficulties, quality of life goals, and emotional and social needs. The author’s strong and diverse experience in clinical, research and technology has resulted in an important guide for practitioners, families, caregivers and persons with disability who are seeking assistive technology supports. Scherer integrates current research with compassionate and relevant case studies of persons with brain impairment including a woman with Down’s syndrome, a young man with a brain injury, and a woman experiencing dementia with aging. You soon realize that Marjorie a 94 year old woman who progressed from mild dementia to major dementia and death in 5 months, was Scherer’s own mother. The book serves in part as a reference manual for therapists and consumers. The author has cross-walked assistive technology products with ICF and ISO 9999 classification systems, provided extensive references for product searches, and included a tool to assess the predisposition of the consumer. The latter is intended to assist in matching the person to technology while considering not only the individual’s cognitive and physical capacities but also his or her quality of life and psychosocial characteristics. Scherer also recognizes that unfortunately technological advancements still continues to outpace our ability to identify payment for such supports. While there are international and national efforts to create consensus, Scherer also highlights the lack of a consistent classification system and terminology which make it difficult to communicate as persons move across systems such as from school to
a vocational rehabilitation program, creates confusion in coding for reimbursement across multiple payers, and results in a poor international shared language and difficulty in searching for products. Scherer also does not shy away from advocating for those she believes should receive more of our attention. She highlights the movement of families with infants and children with developmental disability who assume the majority of the care giving, as well as the task of providing extensive in-home supports. In contrast, she notes that “…options for caregivers of aging persons with dementia increasingly include placement in specialized facilities which, In spite of efforts to lower the staff-patient ratio and create an attractive and homey atmosphere are institutions for all practical purposes.” In this book, Scherer has done a fine job of offering something for everyone. For the experienced practitioner, it serves as a handbook for coding, resources, and research. For the new practitioner, it identifies the cognitive, physical, and behavioral/ psychosocial challenges of persons with a variety of brain impairments and identifies applicable strategies and technologies. For the person with brain impairment, their family and caregivers, it outlines the practical considerations in matching a person with assistive technologies, and includes a number of resources and funding options. Dr. Scherer is also the author of several other books on assistive technology and disability and is the Editor of Disability and Rehabilitation: Assistive Technology, an international multidisciplinary journal. I hope we can look forward to an update in the next few years.
About the reviewer
Dr. Debra Braunling-McMorrow is an international consultant in brain injury. She was the Vice President of Business Development and Outcomes for NeuroRestorative until 2011. She currently serves on the board of the North American Brain Injury Society and is the recipient of the 2007 NABIS Clinical Service Award. Dr. McMorrow is a past chair of the American Academy for the Certification of Brain Injury Specialists (AACBIS) and has served on the Brain Injury Association of America’s board of executive directors as the Vice-Chair for Program Outcomes. She has published in numerous journals and books and has presented extensively in the field of brain injury rehabilitation and has been working for persons with brain injuries for over 25 years. She may be contacted by email at: reviews@braininjuryprofessional.com. BRAIN INJURY PROFESSIONAL
33
27 Life-Changing iPhone and iPad Apps for People with Brain Injury Communication and School Tools ClearRecord Premium
Free
ClearRecord Premium is an audio recording app that is able to suppress ambient, background noise. It features the ability to control play-speed without modifying pitch-quality. The Ambient Noise Reduction (ANR) feature, allows the user to record conversations in any noisy environment — street, train, classroom, or airplane — while still maintaining clear voice. Slow play-speed allows transcription users and new language learners to slow down and listen clearly to a fast speaker while fast play-speed cuts short the time required to listen to a long recording without missing any parts.
D2u Dictation & Transcription
Free
The “d2u app” combines a voice recorder with a transcription service to provide users with a comprehensive dictation and transcription solution. Record, edit, and upload a digital recording then have the file accurately and efficiently transcribed to text anywhere, at anytime. All you need is an Internet connection. It’s easy to use, yet safe and secure. The app is fully data protected and HIPAA compliant.
DragonDictation
Free
Dragon Dictation is an easy-to-use voice recognition app that allows users to easily speak and instantly see their words on the screen. Dragon Dictation for the iPhone or iPad lets you send short text messages, longer email messages, and even update your Facebook and Twitter statuses without typing a word. A great app for people with limited mobility in their hands.
$3.99
Flashcards Deluxe is a flashcard app which you can use to study just about anything you want. Among other features, the app includes Quizlet.com integration where you can browse and download any of the more than fourmillion flashcard sets; use the built-in searchable “dictionary” of your cards that allows you to easily look up other terms as you study; and a way to include pictures and sounds, zoom into pictures, and auto-repeat sounds.
Free
iBooks is Apple’s iPad ebook reader. It allows users to search thousands of popular book and magazine titles and download them instantly. iBooks works with VoiceOver, which will read the contents of the pages out loud. The screen of the iPad is so sensitive to touch that just the slightest movement of a finger will allow many book enthusiasts with disabilities to turn the pages of their own book for the first time.
FlashcardsDeluxe
iBookswithVoiceOver
RFB&DAudio
$19.99
The RFB&D Audio app allows for easy access to Learning Ally’s (formerly RFB&D) downloadable DAISY formatted books. Learning Ally members can explore the library of more than 64,000 audiobooks that are designed for people with print and learning disabilities. * To use RFB&D Audio, membership is required. Membership is free for eligible people with visual impairments or dyslexia.
iConverse
$9.99
iConverse is an educational tool designed for young children and individuals with communicative disabilities, and also toddler-aged children who have yet to master language. iConverse is an Augmentative Alternative Communication (AAC) application for the iPhone and iPod Touch that replaces bulky and expensive communication devices used in the past for digital speech.
ITPADD
$7.99
Integrated Technology for Persons with Autism or Developmental Disabilities (ITPADD) is an iTouch/iPhone application developed to provide individualized portable curriculum for multiple students, reduce cost of traditional materials, increase instructional time, and provide teachers with resources in the palm of their hand.
Penultimate
$1.99
This handwriting app helps you get the fast, tactile gratification of writing on paper, with digital power and flexibility. Take notes, keep sketches, or share your next breakthrough idea — in the office, on the go, or at home. (iPad Only.)
$0.99
Pic-Z Tag is a fun and convenient nametag application that lets you identify yourself to others at a conference, business meeting, or any social gathering. Just enter your name and a brief description and you are ready to greet the world while showing off your high-tech spin on the old nametag. When you meet someone new, you can just flash your iPhone to introduce yourself. It’s especially useful for people who have trouble speaking.
Proloquo2Go
$189.99
The Proloquo2Go app provides a full-featured augmentative and alternative communication solution for people who have difficulty speaking. It provides natural sounding text-to-speech voices (initially American and British English only), high-resolution, up-to-date symbols, powerful automatic conjugations, a default vocabulary of more than 7,000 items, advanced word prediction, full expandability, and extreme ease of use.
SoundAMP
$4.99
SoundAMP is an assistive software application that turns the iPhone into an interactive hearing device. Using the microphone or a headset with a microphone, it amplifies nearby sound so it is easier to hear.
Voice Cards Are Not Flashcards
Free
This app allows you to create voice flashcards with an autoplay and shake option. You can start out by creating sets of flashcards just as you would with paper notecards or flashcards, except you create a voice recording of your questions and answers in sets of Voice Cards. You can “flip” between questions and answers by swiping or shaking the phone.
WordWarp
Free
WordWarp is a game with which you can create as many words as possible from a selection of letters. If you’re stuck, just press the “warp” button and it will help you out. The game could be a useful and fun exercise for people with a brain injury.
Pic-Z Tag
Medication Reminders and Family Care Find a Pharmacy
$1.99
34 BRAIN INJURY PROFESSIONAL
Need to pick up an urgent prescription? Or even just a regular one when traveling for work or pleasure? How about those times when you just want to grab headache pills and a new toothbrush ASAP but aren’t in your regular neighborhood? No matter your location, this app helps you immediately find the closest pharmacy.
My Emergency Info
$0.99
This app is for anyone who cares for disabled people, children, or elders. It’s also useful for individuals and families. My Emergency Info helps you gather important information that is necessary in an emergency situation. The name of your doctor, medications you are taking, medical conditions, allergies, and insurance information can be accessed with the tap of a finger. You can also use the app to find hospitals nearby in case of an emergency.
Pill Time
$0.99
The Pill Time application will keep track of your medicines and remind you when you need to take them. After you set up your schedule, Pill Time will alert you on time even if the app is not running. You can enter as many medicines as you want and define multiple usage time and dosage per day per medicine.
Planning and Organization $4.99
The Corkulous™ idea board gives you an inspired way to collect, organize, and share your ideas. It’s a multipurpose app containing cork boards where you can place notes, labels, photos, contacts, and tasks. Group your ideas visually on one board or spread ideas out across multiple boards (sub-boards also supported). Each cork board has plenty of real estate to capture your best ideas and plans. (iPad Only.)
Index Card
$4.99
Index Card is non-linear writing tool that helps you capture your ideas and store notes as they come to you. With the app, you can organize the flow of your project by using a familiar corkboard interface and compile your work into a single draft document that can be read by most word processors. Index Card will assist in writing, structuring, and managing a large project by allowing you to work in small, manageable chunks. (iPad Only.)
LocateMeNow
$0.99
Find your current location and address with a push of a button. This app finds the total address of your current location like street number, street name, city, state, and zipcode.
Free
Lumos Lab’s Brain Trainer provides exercises targeting memory, attention, speed, flexibility, and problem solving. Users can design their own personalized training, including “courses” with TBI- and/or PTSD-specific content. Users have some control over what exercise they select on given day, and the content adapts to the appropriate challenge level. Lumosity is available on the web and as an iPhone application.
$2.99
Today Screen is a one-stop app for quickly viewing your upcoming agenda, tasks due, and local weather forecast. Tasks and events are intuitively highlighted based on date and time, so that what you need to look at right now stands out clearly. There’s no setup required. Today Screen syncs automatically with your iPhone calendar, which means that events from Microsoft Exchange, Google Calendar, MobileMe, and other accounts are instantly viewable. Local weather forecasts are also automatically provided based on your location.
$2.99
Wallet Advanced is an excellent application for managing website logins, passwords, PIN numbers, credit cards, memberships, family info, product data information, and more. Featuring easy-to-use software, customizable settings, special encryption technology, and synchronization capabilities, Wallet Advanced provides an intuitive solution to overcome your ever-expanding personal data needs. (iPad Only.)
Free
Breathe2Relax is a portable stress management tool. The app is a hands-on diaphragmatic breathing exercise. Breathing exercises have been documented to decrease the body’s “fight-or-flight” (stress) response, and help with mood stabilization, anger control, and anxiety management. Particularly useful for service members or veterans with PTSD and/or TBI, Breathe2Relax can be used as a stand-alone stress reduction tool, or in tandem with clinical care directed by a healthcare worker.
Free
PTSD Coach was designed for veterans and service members who have, or may have, post-traumatic stress disorder (PTSD). The app provides users with education about PTSD, information about professional care, a self-assessment for PTSD, opportunities to find support, and tools that can help users manage the stresses of daily life with PTSD. Tools range from relaxation skills and positive self-talk to anger management and other common self-help strategies. Users can customize tools based on their preferences and can integrate their own contacts, photos, and music. This app can be used by people who are in treatment as well as those who are not. PTSD Coach was created by VA’s National Center for PTSD and DoD’s National Center for Telehealth & Technology.
Free
The Hope for One app focuses on providing support to military veterans and their families who are struggling with post-traumatic stress disorder. The app includes informational videos and testimonials, podcasts from professional counselors and psychiatrists discussing PTSD, links for resources, and a fan wall for people to support each other and share their experiences. People with PTSD — and their loved ones — do not need to go it alone.
Corkulus
Lumosity Brain Trainer
Today Screen
Wallet Advanced
Military-Related Breathe2Relax
PTSD Coach
PTSD Support
T2 Mood Tracker
With T2 Mood Tracker, users can self-monitor, track, and reference their emotional experiences associated with common deployment-related behavioral health issues like post-traumatic stress, brain injury, depression, and anxiety. With each self-rating, notes on environmental influences on emotional experiences can be added. Self-monitoring results can be a self-help tool or they can be shared with a therapist or healthcare professional, providing a record of the patient’s emotional experience over a selected time frame.
Tactical Breather
The Tactical Breather app can be used to gain control over physiological and psychological responses to stress. Through repetitive practice and training, people can learn to gain control of their heart rate, emotions, concentration, and other physiological and psychological responses during stressful situations. Although these techniques were developed primarily for soldiers in combat, anyone can benefit from the ideas taught in this application to help with stressful situations in life. The app may be especially useful for service members and veterans with PTSD and/or TBI.
Free
Free
This resource list provided courtesy of BrainLine. For more information, visit www.brainline.org.
BRAIN INJURY PROFESSIONAL
35
non-profit news NORTH AMERICAN BRAIN INJURY SOCIETY
Led by Tina Trudel, PhD, the 2012 NABIS conference planning committee organized another successful four-day, multi-track event that covered a wide range of brain injury topics including medical best practices, rehabilitation, research, life-long living, pediatrics, and advocacy. The meeting was held in conjunction with the 25th Annual Conference on Legal Issues in Brain Injury at the beautiful InterContinental Hotel in sunny Miami, Florida. This year NABIS was pleased to partner with the Kidz Neuroscience Center of the University of Miami Miller School of Medicine to present a special pre-conference workshop entitled Perspectives in Pediatric Brain Injury chaired by Dr. Gillian Hotz. In addition to the over 90 submitted oral and poster abstracts, the main conference featured over 50 invited speakers in sessions covering the use of technology in brain injury rehabilitation, mild TBI, as well as special sessions on blast injury, neurotoxicity, the latest in neuropsychological testing, educating students with brain injury, public policy and advocacy. A full meeting recap, as well as details on NABIS’ 2013 event, will be posted on www.nabis.org.
Brain Injury association of america
The Brain Injury Association of America’s prestigious William Caveness and Sheldon Berrol awards, recognizing excellence in brain injury research and clinical care, respectively, will be presented to Ross D. Zafonte, DO, and James F. Malec, PhD, ABPP-Cn, Rp, at the ACRM ANSR Annual Conference, taking place Oct. 9-13, 2012, in Vancouver, British Columbia, Canada. Dr. Flora Hammond, a previous winner and one of this year’s judges, will present the awards. Planning is underway for BIAA’s 8th Annual Brain Injury Business Practices College, Jan. 28-30, 2013, at the Chaparral Suites in Scottsdale, Ariz. BIAA’s Personal Stories Blog was launched in December 2011 and is attracting more than 10,000 visitors per month. The blog can be accessed from the Living with Brain Injury section of BIAA’s website, www.biausa.org. We’ve also launched a new awareness campaign, Someone You Love. Visit the Get Involved section of our site for a preview. BIAA is pleased to welcome the first international ACBIS Alliance Award recipient: Acquired Brain Injury-Ireland joins Cardinal Hill Rehabilitation Hospital, Centre for Neuro Skills, Cone Health, Goodwill Industries of Northern New England (Brain Injury Services), LifeBridge Health, Pate Rehabilitation, Robin Hill Farm, Special Tree Rehabilitation System, and West Virginia Traumatic Brain Injury Services at the Center for Excellence in Disabilities in Alliance membership.
DEFENSE CENTERS OF EXCELLENCE
The Major Depressive Disorder (MDD) Toolkit is an important resource for primary care providers working with service members and veterans. The tool kit was developed through the collaborative efforts of Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury (DCoE), U.S. Army Medical Command (MEDCOM) and Department of Veterans Affairs (VA). This tool kit is a comprehensive resource for primary care 36 BRAIN INJURY PROFESSIONAL
providers, promoting accurate screening and diagnosis, symptom management and referrals. It includes the following resources: 1. Provider reference cards and provider pocket card 2. Pocket Cards 3. Booklet: “Depression: Treat It As Your Life Depended On It” 4. CD-ROM: “Taking Control of Depression” 5. VA/DoD clinical practice guideline summary for MDD 6. Tri-fold brochure: depression fast facts 7. VA/DoD essentials for depression screening and assessment in primary care 8. Booklet: “Depression: What You Need to Know” To download electronic versions or order hard copies of the tool kit and/or full-length CPG from the MEDCOM website, follow instructions below: For electronic download, visit the MEDCOM website at http://goo.gl/MrEEx and go to “Tool Kit” then “PDF Downloads.” For hard copies, visit the online shopping cart on the MEDCOM website, http://goo.gl/0ER7L, and under “Shopping Cart,” select “Click Here to Start Shopping.”
INTERNATIONAL BRAIN INJURY ASSOCIATION
Building on the success of the Ninth World Congress on Brain Injury held in Edinburgh, Scotland, in March of this year, the IBIA leadership is actively planning for our next Congress scheduled for March 19-23, 2014, in San Francisco, California. The Tenth World Congress will be organized under the leadership of the 2014 President, Dr. David Arciniegas, and IBIA Chairperson, Dr. Nathan Zasler. They will be supported by planning committee of internationally recognized leaders from the brain injury field representing a broad, multidisciplinary range of disciplines and subspecialties. The International and Local Planning Committees can be found on the IBIA website. Expect the Call for Abstracts to be announced in early 2013. Abstracts will be accepted in the following categories: Prevention; Epidemiology; Basic research, animal; Basic research, human; Basic/Clinical translational research; Case reports; Clinical research, acute care; Clinical research, rehabilitation; Clinical research, vocational; Clinical research, educational; Clinical research, life-long care; and Descriptive models. In addition to the oral and poster sessions, the biennial event will feature a host of world renowned invited speakers, panels and workshops providing attendees with state-of-the-art research on brain injury research, assessment and treatment. As in previous events, delegates will have the opportunity to enjoy wonderful planned social events conducive to establishing new friendships and future collaborations. More details will be posted on the IBIA website as they become available: www.internationalbrain.org.
NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS
The National Association of State Head Injury Administrators assists State government in promoting partnerships and building
systems to meet the needs of individuals with brain injuries and their families. NASHIA originated in 1990 as the first and only forum addressing state government’s significant role in brain injury. Incorporated in Missouri in 1995, NASHIA received its taxexempt designation under Section 501(c)(3) of the Internal Revenue Code in 1999. In addition to state government employees, membership includes retirees and associate members who represent non-state government professionals, consumers and others interested in TBI service delivery. In keeping with its mission and history, the organization offers its members an array of services and benefits through education, training, resources, as well as collective representation before members of Congress and federal agencies. As part of its member services NASHIA sponsors an annual meeting. The 23rd Annual State of the States in Head Injury Meeting will be held Sept. 10-13, 2012, in conjunction with the 28th Home and Community-Based Services (HCBS) conference, sponsored by the National Association of States United for Aging and Disabilities (NASUAD). The conference will showcase promising practices in TBI, cross-cutting issues among various state/federal disability programs & TBI; as well as home and community long-term services and supports. On Sunday, Sept. 9, NASHIA will hold its board meeting and an Orientation session for newcomers. On Monday, Sept. 10th, sessions will focus on TBI topics only. The conference will continue Sept. 11-13 and will include workshops and plenary sessions on public policy, federal programs, TBI, aging, developmental disabilities, substance abuse
Restore-Ragland
and mental health. Information on state TBI programs, NASHIA communications, and other resources may be found on its website: www. nashia.org
UNITED STATES BRAIN INJURY ALLIANCE (USBIA)
The United States Brain Injury Alliance (USBIA) is a national network of non-profit organizations whose missions include advocacy with and support of individuals with brain injuries and their families. Our state members are the primary brain injury advocacy organizations in their respective states and USBIA member states have a combined population of more than 80 million individuals. USBIA now boasts 18 states that have committed as an associate or affiliate member and continues to grow. USBIA serves a collaborative hub between its State members facilitating the creation and diffusion of best practices in systems advocacy (legislative and policy impact), individual advocacy (access to information, services and supports) and organizational development. USBIA has been on-boarding additional state members in the past months, presenting at the NABIS meeting in Miami in September, increasing collaborations with national partners, and supporting our state members in responding to recent media reports of abuse and neglect of individuals with brain injury in rehabilitation programs. More information about USBIA may be found on our website at www.usbia.org.
Restore-Roswell
Restore-Lilburn
Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems. Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).
www.restorehealthgroup.com 800-437-7972 ext 8251 BRAIN INJURY PROFESSIONAL
37
legislative roundup Mothers all want their sons to grow up to be president, but they don’t want them to become politicians in the process. – John Fitzgerald Kennedy It is hard to miss that this is an election year in the country. Campaign speeches, rallies and debates are consuming much of the news media, yet, not much has been said about national disability policy, other than health care in general. To address these issues over 40 national organizations are sponsoring the National Presidential Forum on Disability Issues on September 28 to be held in Columbus, Ohio. It will be the only national event to focus specifically on disability issues. In addition to the presidential candidates, candidates for the U.S. Senate seat from Ohio will also be invited to participate. Why should candidates attend, and why should there be a dialogue on disability policies? •
•
•
•
There are 57 million people with disabilities in the United States, meaning that roughly 1 in 5 Americans have a disability (source: 2000 census). CNN reports that approximately 21 million American families include at least one member with a disability, and over 65 million Americans are caring for family members with disabilities. According to the Disability Funders Network, between 1990 and 2000, the number of Americans with disabilities increased 25 percent, outpacing any other subgroup of the U.S. population. Over a third of seniors have some type of functional disability and more than 70 percent will need long-term services at some point in their lives.
Our presidential candidates have far differing views on the role of federal government with regard to health care, including Medicaid and Medicare, as well
38 BRAIN INJURY PROFESSIONAL
as the overall spending for federal programs. Hopefully, the forum will provide the opportunity to hear about their positions, some of which are available on their campaign websites. To obtain further information, to register or to view the forum webcast go to: www.nfdi.org Members of Congress will return to our nation’s Capital on September 10th, and then will take part of October off to campaign in their home districts. Elections provide an excellent opportunity to inform and educate candidates on brain injury issues. What’s at stake? Congress is still grappling with the federal deficit. When President Obama signed the Budget Control Act of 2011, the legislation not only raised the debt ceiling, but included provisions for reducing the debt and overall spending. A Super Committee was created to make recommendations for cuts and increased revenue with the stipulation that should Congress not reach an agreement, then sequestration would take place with regard to discretionary programs in January 2013. Discretionary programs refer to those programs which receive funding through an appropriations bill, whereas mandatory programs are governed by federal law outside of the appropriations process, such as Social Security, Medicare, Medicaid and Food Stamps. A little over half of the federal budget is for mandatory programs. This means that under sequestration, most federal programs face an across-the-board cut of approximately 9 percent. These cuts would come from both defense and non-defense discretionary (NDD) programs, such as most employment, health and human services, research, training and education programs, including brain injury programs. Before Congress recessed in August, however, House and Senate leaders agreed to a Continuing Resolution (CR)
to continue funding starting October 1 for all government programs through April 2013. The current fiscal year ends September 30, so Congress is expected to pass the CR soon after they reconvene September 10th. The CR would continue federal programs at mostly level funding, meaning the same as the current year. It is uncertain as to what the level of funding will be for the remainder of FY 2013, until it is known how the elections will turn out. This approach does, however, put off sequestration for a few months, should Congress proceed in that direction. In addition to appropriations, there are still several reauthorization bills that have yet to pass, including programs under the Vocational Rehabilitation and Workforce Investment Act, Individuals with Disabilities Education Act, Violence Against Women Act, Lifespan Respite Care Act and the Traumatic Brain Injury Act. Whether incumbents are re-elected or office holders are elected for the first time, there are critical issues affecting individuals with brain injury that will still need to be addressed. Elections do provide the opportunity to hold those discussions.
About the Editor
Susan L. Vaughn, S.L. Vaughn & Assoc., consults with States on service delivery and is the Director of Public Policy for the National Association of State Head Injury Administrators. She retired from the State of Missouri, after working nearly 30 years in the field of disabilities and public policy, and was the first director of the Missouri Head Injury Advisory Council for 17 years. She founded NASHIA in 1990, and served as its first president.
Acute Hospitalization – The book depicts common brain injuries through medical quality illustrations. It provides explanations of diagnostic tests, common equipment used in the ICU, and the acute hospital stage of brain injury rehabilitation.
Print version availiable NOW
Enhanced Book for the iPad – Experience the multi-touch enhanced book which includes video, audio, and interactive 3D illustrations.
Available soon in the Apple iBookStore
Visit our website for more information, to arrange a facility tour, or to make a referral.
BRAIN INJURY PROFESSIONAL
39
SCVBIC
2013
Santa Clara Valley Brain Injury Conference