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B R AIN INJURY professional vol. 3 issue 3

The official publication of the North American Brain Injury Society

Vocational Issues in Traumatic Brain Injury Return to Work for Individuals with TBI: A Supported Employment Aproach Toward a Unified Housing Policy for People with Serious Disabilities Benefits Planning for Individuals with Traumatic Brain Injury: First Step on the Road to Employment Enhancing Academic and Career Success for College Students with TBI: VCU’s Academic and Career Exploration-Individualized Techniques (ACE-IT!) Model Self-Employment Development for People with Traumatic Brain Injuries: Tailoring Approaches to Fit the Unique Needs of People with TBI Key Issues in Assessing Economic Damages in Cases of Acquired Brain Injury


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contents

vol. 3 issue 3, 2006

NORTH AMERICAN BRAIN INJURY SOCIETY

departments 4 Chairman’s Message 6 Guest Editor’s Message 12 Professional Appointments

CHAIRMAN Robert D. Voogt, PhD TREASURER Bruce H. Stern, Esq. FAMILY LIASON Julian MacQueen EXECUTIVE VICE PRESIDENT Ronald C. Savage, EdD EXECUTIVE DIRECTOR/ADMINISTRATION Margaret J. Roberts EXECUTIVE DIRECTOR/OPERATIONS J. Charles Haynes, JD MARKETING MANAGER Joyce Parker GRAPHIC DESIGNER Nikolai Alexeev ADMINISTRATIVE ASSISTANT Benjamin Morgan ADMINISTRATIVE ASSISTANT Bonnie Haynes

BRAIN INJURY PROFESSIONAL

17 Conferences 34 Non-Profit News BRAIN INJURY professional vol. 3 issue 3

The official publication of the North American Brain Injury Society

Vocational Issues in Traumatic Brain Injury Return to Work for Individuals with TBI: A Supported Employment Aproach Toward a Unified Housing Policy for People with Serious Disabilities Benefits Planning for Individuals with Traumatic Brain Injury: First Step on the Road to Employment Enhancing Academic and Career Success for College Students with TBI: VCU’s Academic and Career Exploration-Individualized Techniques (ACE-IT!) Model Self-Employment Development for People with Traumatic Brain Injuries: Tailoring Approaches to Fit the Unique Needs of People with TBI Key Issues in Assessing Economic Damages in Cases of Acquired Brain Injury

features 8 Return to Work for Individuals with TBI:

A Supported Employment Aproach BY PAUL WEHMAN, PhD, PAM TARGETT, MEd 14 Toward a Unified Housing Policy for People with Serious

Disabilities BILL FULLER, PhD 18 Benefits Planning for Individuals with Traumatic Brain Injury:

First Step on the Road to Employment BY LEANNE R. CAMPBELL, PhD, SATOKO YASUDA, PhD, KAREN WILEY, LUCY MILLER, SANDY HARDY 24 Enhancing Academic and Career Success for College Students with

TBI: VCU’s Academic and Career Exploration-Individualized Techniques (ACE-IT!) Model BY ANN T. NEULICHT, PhD, CRC, CLCP, CVE, CDMS, LPC, ABVE-D AND BRIAN PRESTON, MS, CRC, CLCP, ABVE-D 30 Self-Employment Development for People with Traumatic Brain Inju-

ries:Tailoring Approaches to Fit the Unique Needs of People with TBI BY TAMMARA GEARY, ROGER SHELLEY, CARY GRIFFIN, DAVID HAMMIS 36 Key Issues in Assessing Economic Damages in Cases of Acquired

Brain Injury BY A. M. GAMBOA, JR., PhD, MBA

PUBLISHER Charles W. Haynes PUBLISHER J. Charles Haynes, JD EDITOR IN CHIEF Ronald C. Savage, EdD FOUNDING EDITOR Donald G. Stein, PhD DESIGN AND LAYOUT Nikolai Alexeev ADVERTISING SALES Joyce Parker

EDITORIAL ADVISORY BOARD 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 Fax 713.526.7787 Website: www.nabis.org Email: contact@nabis.org

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

NATIONAL OFFICE

North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2006 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

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executive vice president’s message

Ronald Savage, EdD

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BRAIN INJURY PROFESSIONAL

Work. Employment. Jobs. These are such familiar and simple words to each of us, yet, such complex words for individuals with brain injuries. In this issue of the Brain Injury Professional, our Guest Editors Paul Wehman, PhD, and Pam Targett, MEd, and their authors tackle a subject that is not only complex, but a topic that reflects the very core of our being. Work, the jobs we do, brings meaning to our lives in so many ways. Not only are our jobs a source of revenue so we can live and survive, but work is also a way to define who we are as individuals. How many social gatherings do you go to where others ask you, “So, what do you do?” or “Who do you work for?” Many of us not only value the work we do, but we value “ourselves” by what we do. Work for many of us brings meaning to our lives, defines who we are, and supports the paths we have chosen. Obviously, one of the many tragedies for individuals who sustain brain injuries is the sudden loss or change in the work they used to do. It is not uncommon for people trying to return to their former jobs after a brain injury to find they cannot process as fast as before, or they cannot handle the hustle and bustle of the office, or that the demands of the job, once manageable, are now too great. Their previous skills are inconsistent, their day-to-day performance is erratic, and their mental stamina is compromised. Unfortunately, as many of us know, many individuals with brain injuries have great difficulty even performing me-

nial work routines after their injuries. Or, for many individuals, work becomes a revolving door, from one job to another job to another failure and so on. Dr. Debra McMorrow, in her Plenary talk at the 2005 NABIS conference, stated that a major responsibility for all of us as professionals was to “…teach individuals with brain injuries how to live at the poverty level.” It was a profound comment in many ways because the reality is that many people with brain injuries, and their families, must learn how to survive with only minimal resources. We all know that trying to survive on minimum wage and live in substandard housing in impoverished communities weakens anyone’s life. And to try and live like this with a severe disability only further compromises one’s quality of life. Education, hard work and opportunity help many people break out of the poverty cycle. Sadly, a brain injury often robs individuals of these necessary tools. Thus, as Dr. Wehman has stated many times before: society is becoming more complex and technology and jobs are becoming more specially designed (Wehamnn, 2006). We need a more sophisticated approach to do job training, along with the facilities and resources to so. This issue presents many of these ideas and moves our thinking forward not only regarding the importance of work in each of our lives, but how to make this a reality for individuals with brain injuries. Ronald Savage, EdD


Shepherd Center ACQUIRED BRAIN INJURY PROGRAM

Announces An Expansion of Services & Opportunities for Experienced Staff

Shepherd Center’s Brain Injury Program provides rehabilitation for adolescents, young adults and adults (age 15-65) with mild to severe brain injuries.

The program includes a full continuum of services: ICU

New Programs

Acute Medical Care (Pre- Rehabilitation Program (PREP) – For Coma/Minimally Conscious Patients) • Expanding from 4 beds to 10 beds Acute Inpatient Rehabilitation

• Interdisciplinary Center for Advanced Neurorecovery (ICAN), which emphasizes new technology and advanced practices for clients who have completed rehabilitation Other Programs

Opportunities for Staff In January 2007, Shepherd Center will be recruiting for the following experienced brain injury professionals: • RN • PT • OT

• Expanding from 20 inpatient beds to 30 inpatient beds

• Supported Living Program

• Speech Therapists

• Sports Concussion Program

• Therapeutic Recreation Specialists

• Expanding Young Stroke Program

• ABI Research Program

• Case Managers • Neuropsychologists

Post Acute Programs • Residential Program – 12 Beds • Day Rehabilitation • Outpatient Services

For additional information, or to schedule a tour of Shepherd Center, please contact Glenn Prescott at 404-350-7340 or email glenn_prescott@shepherd.org. Resumes should be faxed to 404-350-7346. EOE.

Visit Shepherd Center’s Web site at www.shepherd.org to review employment opportunities and complete an application online. BRAIN INJURY PROFESSIONAL

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guest editor’s message The topic of this issue of Brain Injury Professional is Vocational Issues in Traumatic Brain Injury, a subject which has not received the amount of attention deserved, particularly given the often drastic life changing impact of this disability on both the individual and their family. Over the years, it has become increasingly clear that this is a long term disability. We have also learned that we have the ability to assist individuals with TBI with improving their quality of life through supports. In both the community reentry and vocational arenas, individualized supports vary in types, levels, and intensity. Coupled with knowledge on legally mandated rights and a means for exercising them, many individuals with TBI will be able to rebuild their lives and look forward to their futures. In this issue a number of leaders in the field and professionals were asked to either write practical articles related to vocational rehabilitation or work related topics. We hope that from these readings you will immediately acquire valuable information that will assist you in your day to day practices. In the first article, (Wehman & Targett) Return to Work for Individuals with TBI: A Supported Employment Approach, we introduce this vocational service option. A description of the individual approach to supported employment is presented. Next, some of the quality indicators that are linked to effective service delivery are provided. In the conclusion, several points related to the need for future research, policy, and employment practices to improve work outcomes for people with TBI are offered. Housing can be one of the most difficult reintegration issues facing people with brain injuries. Few dedicated housing models exist at this point and the housing options that do exist often are not designed to meet the complex needs of the person with brain injury. Historically society has assumed that people with severe disabilities would either live at home with family members or be confined to a state facility. In his article, Toward a Unified Housing Policy for People with Serious Disabilities, Fuller examines what is needed to move in this direction. With the proper advisement of federal work incentives and provisions, individuals with TBI who are motivated to seek self-sufficiency by gaining and retaining competitive employment can do so with less perceived financial and health risk. Campbell, Yasuda, Wiley, Miller, 6

BRAIN INJURY PROFESSIONAL

and Hardy, in Benefits Planning for Individuals with Traumatic Brain Injury: First Step on the Road to Employment examine the demographics of individuals with TBI and discuss the plethora of benefits counseling conducted under the Benefits Assistance Resource Center using the National Benefits Planning Assistance and Outreach database compiled by Virginia Commonwealth University. In the article, Enhancing Academic and Career Success for College Students with TBI: VCU’s Academic and Career Exploration-Individualized Techniques (ACE-IT!) Model Briel McManus, Getzel discuss the common challenges of students with disabilities in higher education. The authors also describe a supported education/career planning model called Academic and Career Exploration-Individualized Techniques (ACE-IT!) used at Virginia Commonwealth University. Self-employment is gaining respect as a vocational service option nationwide. In the article Self-Employment Development for People with Traumatic Brain Injuries: Tailoring Approaches to Fit the Unique Needs of People with TBI, Geary, Shelley, Griffin, and Hammis review how self employment can become a reality through inventive, replicable, and capacity building approaches. Finally, Anthony Gamboa rounds out this issue with a discussion of the loss of future earning capacity in the article Key Issues in Assessing Economic Damages in Cases of Acquired Brain Injury. ABOUT THE GUEST EDITORS

Paul Wehman, PhD, is Professor of Physical Medicine and Rehabilitation, with joint appointments in the Department of Curriculum and Instruction and Department of Rehabilitation Counseling. He pioneered the development of supported employment at VCU in the early 1980s and has been heavily involved in the use of supported employment with people who have severe disabilities, such as those with severe mental retardation, brain injury, spinal cord injury or autism. Dr. Wehman is also Director of the Rehabilitation Research and Training Center on Workplace Supports and Chairman of the Division of Rehabilitation Research. Pam Targett, MEd is the Director of Employment Services at the Rehabilitation Research and Training Center on Workplace Supports. She oversees the day to day operations of the RRTC Supported Employment vendorship that serves approximately 70 individuals a year. She has been involved with direct services since 1986. During that time, she has served as the project coordinator for a number of demonstration projects that show how individuals with the most severe disabilities can work.


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BY PAUL WEHMAN, PhD, PAM TARGETT, MeD More than 80,000 people with severe brain injuries survive each year (Ansberry, 2004). Many are young males with long life expectancies. Those who live post injury often face great difficulties or failure when trying to return to work. Employment becomes a challenging, if not unlikely, feat to attain due to a myriad of cognitive, physical, and psychosocial problems. Meaningful productive employment enhances self esteem, financial status and one’s overall quality of life; yet for many individuals with TBI this seems unlikely (Partridge, 1996; Pettifer, 1993). Due to this and other factors, vocational rehabilitation strategies to assist individuals with return to work post TBI is of utmost importance. Over the years, work has become a focus of community based rehabilitation for individuals with TBI. In the late eighties, practical strategies to help individuals with TBI with return to work were just evolving and implementation of supported employment for individuals with TBI had been described by Wehman et al in detail (Wehman, Kreutzer, Sale, et al., 1989; Wehman Kreutzer, West, et al., 1989). This model was based on demonstration projects with other populations and had become a vocational rehabilitation option by the way of the 1986 Amendments to the Rehabilitation Act (Federal Register, August 14, 1987). In the amendments, supported employment was defined as “paid work in a variety of settings, particularly regular work sites, especially designed for handicapped individuals: 1) for whom competitive employment has not traditionally occurred and 2) who because of their disability need intensive ongoing support to perform in the work setting.” Notably, in 2001, the Rehabilitation Services Administration (RSA) amended its regulations governing state vocational rehabilitation programs to redefine the term “employment outcome” to mean “an individual with a disability working in an integrated setting” (Federal Register, January 22, 2001). Extended employment (formerly sheltered employment) was, for decades, an acceptable outcome for individuals receiving VR services. The new definition removes this type of employment as an approved outcome, as extended/sheltered employment uses non-integrated work settings. Although progress in developing effective return to work programs for individuals with TBI had been relatively slow and related research was limited; by the 1990s vocational rehabilitation for individuals with TBI was coming in to the mainstream. In addition to supported employment, other practical strategies to promote work like learning style assessment, role playing, using prosthetic aids and cognitive devices were being described (Bellamy, Roads, Alden, 1986; Buffington, Malec, 1997; Haffey, Abrams, 1991; Parente, Stapleton, Wheatley, 1991). In the late 90’s the Agency for Health Care Policy and Research awarded a contract to Oregon Health Sciences University for a review of published reports and compilation of an evidence report (Wehman, Targett, West, 2005). One question posed was “Does the application of supported employment enhance outcomes for people with TBI? ´ A Medline Search from 1976 to 1997 supplemented by other searches produced a total of 3098 references to be considered for inclusion (Chestnut, Carney, Maynard, et al., 1999). Among those, 392 applied to supported employment 8

BRAIN INJURY PROFESSIONAL

and after an expert review only 93 articles remained. Upon review, Class II evidence existed that supported employment can improve employment outcomes for people with TBI. Class II evidence were RCTs with design flaws, well done, prospective, quasi-experimental or longitudinal studies and case control studies. The review also concluded that the findings had not been replicated in other settings so the generalization of the approach remained untested. Although promoted as an innovative and promising approach to return to work after TBI, supported employment continues to be an underutilized approach. A recent review of biennial RSA 911 data from 1993 through 2001 indicated that the VR system is serving increasing numbers of individuals with TBI with some success (approximately 60%) rehabilitated (Wehman, Targett, West, 2005). This shows a steady progression of individuals with TBI closed in competitive employment. However, the data indicated only 10 percent of those rehabilitated used Supported Employment. One potential way to increase access to the supported employment as a vocational service option is to provide education and training to individuals with TBI, family members, vocational rehabilitation and other professionals. This paper will introduce this vocational service option and hopefully serve as a catalyst to encourage readers to learn more about supported employment and how it might assist individuals with TBI with returning to work. First a description of the individual approach to supported employment is presented. Next, some of the quality indicators that are linked to effective service delivery are provided. In the conclusion several points related to the need for future research, policy, and employment practices to improve work outcomes for people with TBI are reviewed.

Underlying Principles and Service Description Today supported employment is defined as “competitive work in integrated work settings, or employment in integrated work settings in which individuals are working toward competitive work, consistent with the strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice of the individuals. It is for individuals with the most significant disabilities for whom competitive employment has not traditionally occurred; or for whom competitive employment has been interrupted or intermittent as a result of a significant disability; and who, because of the nature and severity of their disability, need intensive supported employment services for the period, and any extension, and extended services after the transition in order to perform such work” (Federal Register, June 17, 2001). A major theme of this approach is provision of services at the job site. The staff person at the job site is often referred to as an employment specialist or job coach. The service description that follows will provide more details on that vocational professional’s role. Another underlying principle is the provision of services to individuals with severe disabilities who need specialized assistance. Supported employment is not a suitable option for everyone with a disability who desires to work. It should be reserved for those individuals who would be unlikely to gain or maintain employment without on site ongoing assistance. For example,


if a person needs assistance advocating for work, but then can learn how to do the job by participating in the employer’s new employee training program then this type of service option may not be suitable. Individuals who utilize this service usually are not able to locate work or retain work for a variety of disability related reasons. Typically those who access supported employment need individualized vocational rehabilitation services to assist them with1) creating and understanding what he or she is good at and may be able to offer an employer; 2) locating and negotiating suitable work; 3) identifying and receiving an array of workplace supports or accommodations to enhance performance; 4) problem solving issues both at and outside of work that if left unattended could lead to separation from employment. Some other important values that are held by successful SE programs are listed in Table 1. Four major program components typically characterize the individual approach to supported employment (Business Connections Program Outcomes Report, 2005). These include: establishing a career direction, locating and negotiating work, providing and facilitating workplace supports and long term job retention services. A brief overview follows:

Establishing a Career Direction The first step involves getting to know the job seeker to generate some ideas and guidelines on what suitable employment might look like to him or her. The coach must investigate the jobseeker’s abilities, desires, likes, dislikes and support needs. This is accomplished through a variety of functional approaches to vocational assessment like spending time with the person in his or her home to discuss wants and desires, observing current abilities and skill levels in various community settings or in real workplaces for brief periods of time known as situational assessments, and or exploring jobs by conducting informational interviews with employees in various occupations. As necessary, a customized vocational assessment is designed to evaluate an individual’s residual vocational skills. For instance, if a person was a computer programmer prior to injury, an assessment may be specifically designed to find out what it might take to assist the individual with returning to this or a related occupation. Such an assessment takes place in a real work place. The assistance of an “expert” who is employed in the field in question may be needed to help assess the person’s existing skills and supports when attempting to return to a particular line of work. Whatever the approach, the information gained is used to form a preliminary vocational profile and establish the direction of the job search. Assessment should not be a lengthy process. Instead it should be viewed as an ongoing process and information gained overtime should be used to update the person’s profile. Locating and Negotiating Work With a better understanding of what the job seeker has to offer the business community and what terms he or she is willing to accept from employment, the job coach sets out to locate viable work opportunities. This process is often referred to as job development, and typically focuses on looking for work in the “hidden” job market rather than work being advertised. This particular approach helps eliminate the competition for a job and gives both the coach and prospective employee an opportunity to learn more about the work place. Learning about the workplace in advance helps the coach identify existing work place supports and understand other supports that may be able to be developed. While there is no such thing

TABLE 1

Select Guiding Principles of Supported Employment for Persons with TBI

Individuals with severe TBI can go to work when the right type, level, and intensity of supports are provided. Self awareness about current abilities and acceptance of disability can be gained through work. Although useful under some circumstances counseling to increase awareness does not have to precede going to work. If a person was employed at the time of injury, return to work in the same or a modied job should be pursued. Business is as much a customer of services, as is the person with TBI; and must be treated as such. Job coaches must understand a businesses needs and be able to alleviate any spoken or unspoken fears or concerns related to hiring someone with a TBI. Job retention is enhanced when the jobseeker guides the job search and selection. The employee must be able to make a meaningful contribution to the workplace and, as necessary, work should be negotiated. Prevocational training need not precede employment as vocational skills including valued worker traits and social skills are best taught on the job. Workplace supports should complement not supplant existing business practices. Job coaches should provide education and training aimed at making the workplace supportive of employees with disabilities including TBI.

as a perfect job match, examining this information in advance can help increase the odds of locating successful work. Also, it is not unusual to actually “develop” or negotiate a specific job for a job seeker. For example, an employer may be willing to create a job for someone, if he can see how it brings value to the business such as increased efficiency of financial savings. Job creations require negotiations, thus the job coach must understand the business operations and its needs. Only then can negotiations to create an optimal employment situation, one that is suitable to parties, the job seeker and employer, be achieved. Along with trying to negotiate a suitable job match, learning about the work in advance should provide the job coach with critical information related to existing, as well as needed work place supports. For example, the employer may already have a number of supports readily available to all employees to assist them with accomplishing a task like using a checklist to ensure daily tasks are correctly completed. This type of compensatory memory strategy may help a new hire with a poor short term memory remember what to do. This advance preparation also gives the job coach insight into other potential strategies and technology that the prospective employee might use to learn and perform the job. However, the final decision on what strategies or technology to try is not determined until the person goes to work and performance observations are made. Notably, employers who are willing to let the job coach learn about their place of business and work needs in advance, often have a supportive work culture. Work cultures that are supportive of all workers, disabled or not, are likely to be dedicated to helping a new hire succeed. Once a potential work opportunity is located, the job coach arranges a meeting between the employer and job seeker. At this time each party has a chance to evaluate whether or not to move forward with employment. The employer interviews the candidate to decide about making an offer, while the jobseeker is assisted with weighing the pros and cons of a particular situation to determine if the work is suitable. For instance, a job seeker may not want to work weekends; but may decide to accept a job that requires work every other weekend. Or the job seeker may have initially been adamant about not accepting part-time work; but may decide to accept an offer if getting his foot in the employer’s door is to his advantage.

Providing and Facilitating Workplace Supports Once hired, the job coach accompanies the newly hired employee to work, in order to provide or facilitate an array of supports. Supports will vary in type and level of intensity depending upon the particular situation at hand. Typically, on the job supports include providing additional on the job skills training to the new employee that extends beyond what most employers can offer without undue hardship. This additional training is not intended to supplant the employer’s new employee skills training, but simply extends it. Sometimes training on ways to enhance social and communication skills with job site personnel is also provided. Developing and teaching the person to use compensatory memory strategies and assistive technology are other types of workplace supports. Again, since each worker and employment setting is unique, supports and training strategies must be specifically designed after the person starts work. Some examples of work place supports are offered in Table 2. Because it often takes the newly hired employee longer to learn the new job duties or perform tasks to the established rate, it is not unusual for the coach to make sure the job duties are completed while the worker is learning the job. This offers an incentive for the employer to employ someone who needs substantially more time to learn how to perform the job than the average new hire. Sometimes issues may surface outside of work that if left unattended might negatively impact ongoing employment. For example, a person may experience problems with getting to work in a timely manner due to transportation problems. The job coach is available to assist the person with finding ways to resolve such difficulties. Early on, the person should learn contingency strategies related to what to do when difficulties arise like how to notify work if you are going to be late or identifying alternative means of transportation. Data is collected to help make decisions about the effectiveness of the skills training and determine areas in need of improvement. Valuable insight on when and how the job coach should fade instruction and his or her presence from the job site is also gleaned from the data. As the new employee learns the job, and the employer reports satisfaction with the worker’s performance, the job coach begins to systematically spend less and less time on the job site, until eventually, he or she is no longer there on a daily or weekly basis. BRAIN INJURY PROFESSIONAL

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Providing Long Term Job Retention Services Although no longer on the job site, the coach remains in contact with both the employee and employer by visiting the job site on a regularly scheduled basis. If needed, the coach is available to provide or facilitate additional on the job support throughout the individual’s employment. The coach keeps abreast of these potential needs by visiting the job site to make observations and inquires about how things are going. Among other reasons the coach may be required to return to the site to provide new or additional skills training, help acquaint the employee to new management, revise compensatory memory strategies and/or problem solve issues at or outside of work that are impacting work. The job coach also makes referrals to other resources as needed like substance abuse counseling, support groups or social activities. Quality Performance Indicators Once a person with TBI decides to use supported employment services he or she will need to select a service provider. To select a quality provider it may be useful to be familiar with performance indicators. Interviewing potential providers should assist the individual with selecting a good one. Later the information gained can be used to evaluate whether or not effective services are being rendered as seen below in Table 3. Future Directions A recent article by Wehman, et al, in the 20th special anniversary issue of Journal of Head Trauma Rehabilitation discussed a number of areas for future research, policy and employment practices that need to occur to improve work outcomes for individuals with TBI. This paper will conclude with a brief synopsis of those salient points. First there needs to be evidence based prospective studies that compare the efficacy of different interventions in vocational outcomes. Also, research should compare outcomes between employment retention among those who use supported employment and those who do not. The use of peer mentors and coworkers in the workplace as supports needs to be further investigated. Second, there needs to be public funding sources to promote the employment of individuals with TBI. To date, few individuals with TBI are participating in One Stop Career Centers. Also, very few states are offering the Medicaid Waiver option to fund long term employment. Third party insurers often do not pay for vocational service options. This creates a huge barrier to work and those who have occupations to return to post injury may never have the opportunity to attempt to do so with specialized supports. Next, individuals with TBI need to use the work incentives provided by the Social Security Administration. This includes Plans for Achieving Self Support, Impairment Related Work Expenses and benefits counseling. Fourth, alternative work strategies like self employment, telework and temporary employment needs to be investigated. Classroom supports to assist individuals with continuing their education need to be explored. Finally, training and education to professionals about the work capacity of people with TBI is critical. Rehabilitation counselors, case managers, therapists, physicians, school personnel and others who serve individuals with TBI must understand that each person has potential and the power of workplace supports. Direct vocational service providers must become savvy at providing and facilitating the right type, level, and intensity of supports in the workplace. This also requires an ability to work closely with community business leaders to gain their confidence and assist them with identifying, creating, and providing workplace supports. Professionals must also understand that individuals remain in jobs they feel are worth keeping. Thus work should be viewed as an opportunity to learn more about preferences, abilities, and support needs.

TABLE 2

Examples of Compensatory Memory Strategies

This information can then be used to guide future job searches. Also, a “once and done” approach to vocational rehabilitation is not acceptable. Individuals with TBI just like anyone else must also have the chance to learn from their success in life as well as their mistakes. Thus, involuntary job terminations should be viewed as “learning experiences” rather than as evidence that the person can not competitively work in the community.

REFERENCES

Ansberry C. Parents devoted to a disabled child confront old age: failing strength may force the communal care they dreaded for so long. The Wall St J. January 7, 2004;A1-2A10. Partridge TM. An investigation into the vocational rehabilitation practices provided by brain injury services throughout the United Kingdom. Work. 1996;7:63-72. PubMed. Pettifer S. Leisure as compensation for employment and unfulfilling work: reality or pipedream. J Occup Sci. 1993;1(2):20-28. PubMed. Wehman P, Kreutzer JS, Sale P, et al. Cognitive impairment and remediation: implications for employment following traumatic brain injury. J Head Trauma Rehabil. 1989;4(3):66-75. Wehman P, Kreutzer JS, West M, et al. Employment outcomes of persons following traumatic brain injury: pre injury, post injury and supported employment. Brain Inj. 1989;3:397-412. The State Supported employment services program final regulations. Fed Regist. August 14, 1987;52: 30546-30552. The State Vocational Rehabilitation Services Program final rule. Fed Regist. January 17, 2001;66: 4379-4435. Bellamy GT, Roads LE, Alden JM. Supported employment. In: Kiernan WE, Stark JA, eds. Pathways to Employment for Adults With Developmental Disabilities. Baltimore, Md: Paul H. Brookes; 1986. Buffington ALH, Malec JF. The vocational rehabilitation continuum: maximizing outcomes through bridging the gap from hospital to community-based services. J Head Trauma Rehabil. 1997;12(5):1-13. Haffey WJ, Abrams DL. Employment outcomes for participants in a brain injury work reentry program: preliminary findings. J Head Trauma Rehabil. 1991;6(3):24-34. Parente R, Stapleton MC, Wheatley CJ. Practical strategies for vocational re-entry after traumatic brain injury. J Head Trauma Rehabil. 1991;6(3): 35-45. Chesnut RIM, Carney N, Maynard H, Mann NC, Patterson R Helfand M. Summary report: evidence for the effectiveness of rehabilitation for persons with traumatic brain injury. J Head Trauma Rehabil. 1999; 14(2):176-188. Wehman, P., Targett, P., West, M. (2005). Productive work and employment for persons with TBI: What have we learned after 20 years? Journal of Head Trauma Rehabilitation 20(2), 115-127. Business Connections Program Outcomes Report, Virginia Commonwealth University’s Rehabilitation Research and Training Center on Workplace Supports, July 1,2004-June 30, 2005; 2005.

TABLE 3 PERFORMANCE INDICATOR

Quality Performance Indicators POSSIBLE MEASURE

SIGN OF QUALITY PROGRAM

Convenience of location

Are meetings held in locations chosen by me?

Meetings can be arranged outside ofce setting at consumer’s home or elsewhere.

Satisfaction with timeliness of services

How often will I receive services?

Although it may take varying amounts of time to locate work, pre-employment services (ie. job development) is ongoing until work is located.

Convenience of appointment times.

Are meetings held at times that are convenient to me?

Meetings can be scheduled outside of normal business operating times.

Time from referral to service initiation

How long does it take before services are initiated?

Services start immediately.

Degree of involvement in service delivery

How can I participate in service delivery?

Individuals are encouraged to get involved as much as they like and are able.

Degree of involvement in decision making

Who will determine whether or not to accept a job offer?

Individuals are assisted as needed with making the decision to accept or reject an offer.

Rate of satisfaction

Are others satised with the overall quality of your services?

Program outcome data is available that documents satisfaction and testimonials are offered.

Effective communications

How often will someone communicate with me about job development efforts?

Mode of communication and schedule is established by the individual.

Appropriateness of services to individual employment needs and learning styles

What supports does staff use on the job?

Case study examples illustrate creative supports.

PRESENTING ISSUE

STRATEGY

Employee late to work because sometimes takes the wrong bus.

Name of destination for bus to take typed on business card, laminated, and kept in wallet for reference each morning and afternoon.

Degree to which those employed maintain full or part-time work.

Program outcome data document job retention rates and reasons for separation.

Employee not remembering the correct way to make salads; different types of salads are missing certain items (ie. Caesar croutons and red onion; white onion and cucumber etc…)

What is the average length of employment for those served to date and range of months employed among those working each year?

Photos of each completed salad with list of ingredients including picture of each posted at work station for worker to refer to when making the salads.

People go to work in various occupations

Where are people employed and what do they do there?

Program outcome data documents where people work and what they do.

Employee takes extended breaks beyond allotted time.

Alarm watch is set to go off after designated period of time (ie. 15 or 30 minutes)

Jobs are located that match jobseeker and employer needs.

What are some examples of jobs have staff negotiated/created?

Case examples and testimonials are available to document negotiation of creative work structures.

Employee cannot remember how to get out of building at end of shift.

Rhyme is used to remember how to get there; “Down the hall to Paul, take a left, go to the wall and past the stalls, up the hall; now you’re there say bye you all.”

Degree of overall satisfaction with services

How many people leave your service each year and why?

Program outcome data documents reasons individuals left services and level of satisfaction at that time.

10 BRAIN INJURY PROFESSIONAL


Opening Summer 2006

Neurological Rehabilitation Living Center 1853 Old Donation Parkway | Virginia Beach, Va 23454 Dr. Robert Voogt is proud to announce the construction of a new, state-of-the-art neurorehabilitation program. The home-like residence is part of a quiet neighborhood yet walking distance to an extensive medical complex and hospital. Just three miles to the ocean front, the

home will have 12 private suites for residents seeking community re-entry or long-term care. Neurological Rehabilitation Living Center will continue the tradition of providing the highest quality of care for individuals living with neurological challenges.

Robert D. Voogt, Ph.D., C.R.C. | Founder and Program Director Robert Voogt & Associates, Inc. | 1055 Laskin Rd., Suite 100 | Virginia Beach, VA 23451 | 757-417-6518 | rva@rvarehab.com

BRAIN INJURY PROFESSIONAL

11


Acquired Brain Injury Services Building Relationships. Enhancing Lives. Our continuum of community-based care for persons with ABI may include: •NeuroRehabilitation •NeuroBehavioral Rehabilitation •Adolescent Integration •Supported Living Programs •Outpatient Services •Day Treatment / Outpatient •Respite Services •Vocational Support •Community-Based Residential Services Part of a National Network of Local Providers MENTOR ABI offers Brain Injury Services in these locations CCS-Carbondale, IL CCS-Florida CCS-Kentucky CCS-New England CCS-Tennessee REM-Wisconsin Brain Injury Services www.mentorabi.com

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12 BRAIN INJURY PROFESSIONAL

For more than 120 years, Bancroft NeuroHealth has helped people with brain injuries rebuild their lives, step by step. Our person-centered programs are based on the needs of each individual, with the goal of helping each person reach his or her maximum level of independence and lead the most fulfilling life possible. With a range of community-based and campus-based options, Bancroft provides a full continuum of life skills rehabilitation at several locations in New Jersey. These include a return to school, work, social and recreational activities. Our outcomes-oriented planning encourages personal achievement — leading to both greater independence and reduced costs.

professional appointments RN PATIENT CARE DIRECTOR for three Rehabilitation nursing units including brain injury, spinal cord injury , stroke and pain management. Touro Rehabilitation, New Orleans, LA. Minimum 5 years experience. MSN required. Apply online at www.touro.com PHYSICAL THERAPIST, OCCUPATIONAL THERAPIST, SPEECH & LANGUAGE PATHOLOGIST AND NURSING openings at Craig Hospital. For information go to www.craighospital.org. Career Opportunities, or send resume to Susi Szaltzer, RN, BSN, MS, Healthcare Recruiter, Human Resources, Craig Hospital, 3425 South Clarkson Street, Englewood, CO 80113. Phone: (303) 789-8463, Fax: (303) 789-8684 or Sszaltzer@craighospital.org. RNs Touro Rehabilitation Center is seeking RNs full time, part time, and flex for their 27 bed Physical Rehab Unit for Stroke and SCI patients who need bedside rehab nursing caregivers. Prefer Certified Rehabilitation Registered Nurses, 8 and 12 hour shifts, with weekendonly options available. Competitive salary. Contact Susan Greco at GrecoS@Touro.com or phone (504) 897-8082 to apply. CNAS, REHAB ASSISTANTS & PC TECHS Touro Rehabilitation Center is seeking CNAs, Rehab Assistants, and Patient. Care Techs for overnight 8-hour shifts, with weekend-only options available. New competitive salary ranges and differentials. Contact Susan Greco at (504) 897-8082 or by email, GrecoS@Touro.com to apply. STAFF OTs Touro Rehab Center is seeking staff OTs for inpatient and outpatient programs. Experience preferred. To apply, contact Marylee Pontillas at (504) 897-8309 or by email at PontillasM@ Touro.com NURSES needed for brain injury rehab at Centre for Neuro Skills, a post-acute brain injury rehab clinic which offers intensive residential and out-pt rehab for clients recovering from all types of acquired brain injury. The CNS community based approach focuses on helping clients regain a normal rhythm of living. Irving, TX clinic has openings for Licensed Nurses, M-F, holidays off, exc. benefits. Rehab experience is preferred. Resumes to hrtx@neuroskills.com or call (972) 580-8500. PHYSICAL THERAPISTS Touro Rehabilitation Center is seeking staff PT’s for their CARF accredited SCI and general medical rehab programs. PTs with experience in SCI and general rehab preferred. To apply, contact Barbara Adcock at (504) 897-8310 or by email at AdcockB@Touro.com DIRECTOR, THERAPY SERVICES for premier facility: 124 bed state-of-the-art hospital that provides comprehensive medical rehabilitation programs for people with spinal cord124-bed, state-ofthe-art hospital that provides comprehensive medical rehabilitation programs for people with spinal cord and brain injuries, stroke and other neurological and orthopedic disorders. Only freestanding physical rehab center in the state, and one of only 17 hospitals in the country designated a Traumatic Brain Injury Model System. Located in Southeastern, capital city honored as one of America’s Most Livable Cities. Cost-of-living below national average, wide variety of reasonable housing options, public school systems with Level 5 state accreditation, 2 and 4-year colleges, and number of cultural and recreational activities. Reports to VP. Department has 39 FTEs with little turnover. Require 10 years’ combined management and clinical experience in Therapy Services, Master’s and current licensure. Strong management, communication and clinical skills, and proven leadership ability in planning, organization and working with and through others. Contact: Linda Garrett, Garrett Associates Inc., (404) 364-0001, Garrett@GAISearch.com OCCUPATIONAL THERAPIST - Opportunity to make a difference with clients who have sustained or acquired brain injuries. This individual will work with a team of skilled professionals. Related degree and license to practice is required. Contact Cynthia Calhoun, PHR, Director Human Resources at Transitional Learning Center, 1528 Postoffice Street, Galveston, TX 77550, (800) TLC-GROW or (409) 797-1445. Fax (409) 797-1480 or email: ccalhoun@tlc-galveston. org. www.tlcrehab.org OCCUPATIONAL THERAPIST Peace Rehabilitation Center, located in downtown Greenville, SC, specializes in community reintegration and provides unique opportunities for treatment. The Greenville Hospital System University Medical Center is one of the largest hospital systems in South Carolina and a leader in research, medical education and critical care. We are seeking SC License or SC License eligible candidates for a full-time Occupational Therapist position. Experience preferred. CARF accredited Outpatient brain injury program. We offer competitive pay, excellent benefits package, relocation assistance, 90 day COBRA Reimbursement and interview expenses. $5000 Sign on Bonus. Visit our website at www.ghs.org to learn more and submit an online application for immediate consideration. Contact Renee’ Bacon, Senior Employment Specialist, for more information at (864)455-8452 To list your professional appointments on this page, please contact Joyce Parker, (713) 526-6900, or by e-mail: jparker@hdipub.com.


REHABILITATION CENTER A HISTORY OF SHARED SUCCESS For a free professional assessment and excellent treatment you can count on, call us. • Fully accredited for Brain Injury, Spinal Cord Injury, Chronic Pain, and Stroke • Full spectrum of in- and outpatient services • Return of patient to highest level of function Call 897-8565 for a confidential professional consultation free of charge. 1401 Foucher Street • New Orleans, LA 70115 www.touro.com

Putting Lives In Motion for 21 Years

BRAIN INJURY PROFESSIONAL

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Toward a Unified Housing Policy for People with Serious Disabilities

BY BILL FULLER, PhD Housing can be one of the most difficult reintegration issues facing people with brain injuries. Few dedicated housing models exist at this point and the housing options that do exist often are not designed to meet the complex needs of the person with brain injury. Historically society has assumed that people with severe disabilities would either live at home with family members or be confined to a state facility. In the post Olmstead era people with severe disabilities are moving into the community at a rate far surpassing any time in history. For community living, social service organizations have traditionally used congregate living models or some form of modified independent living such as supported living, supervised living or assisted living models. Lezak (2005) points out that: “Neuropsychological impairments caused by brain injury may be characterized in terms of three functional systems (1) intellect which is the information-handling aspect of behavior; (2) emotionality, which concerns feelings and motivations; and (3) control, which has to do with how behavior is expressed. Brain damage rarely affects just one of these systems. Rather, the disruptive effects of most brain injuries, regardless of their size or location, usually involve all three systems.” (p. 2) Few community based services are fully equipped to deal with such a complex combination of characteristics. HUD has relied almost solely on the 811 “Housing with Support Services” program as a one size fits all prescription to meet the housing needs of people with disabilities. State Finance Agencies in recent years have concentrated primarily on the “End Chronic Homelessness in Ten Years” initiative, which offer little to people with brain injury. The New Freedom Initiatives have been remarkably silent on the issue of housing for all people receiving Medicaid and except for the ancillary housing provided by default in state institutions Medicaid has opposed any suggestions that such funding be used to provide housing in the community for people with severe disabilities. This disconnect between federal housing policy and federal Medicaid policy has detrimentally effected all people with serious disabilities but none more than people who need comprehensive services over long periods of time such as people with brain injury. While the New Freedom Initiatives where providing hundreds of millions of dollars for “Rebalancing” and implementing “Money Follow People” policies, HUD was attempting to cut similar amounts out of the Housing Choice Voucher Program and suggesting that Public Housing Authorities might want to look toward serving less needy people as a strategy to meet severe budget constraints. The end result has meant that finding appropriate community housing for people with brain injury, complimented by a full array of support services has been difficult. The Housing Choice Voucher program is the one federal housing 14 BRAIN INJURY PROFESSIONAL

support program that most closely follows the “Money Follows People” principle of the New Freedom Initiatives by allowing people to migrate to housing best suited to their individual needs. Other subsidy like Supported Housing with Services (811) and Supportive Housing for the Elderly (202) programs by design require people to follow these subsidies to wherever the sponsoring non-profit organization is able to build the housing. The Section 8 Housing Program was established by Congress in 1974. In accordance with the “1998 Act” and effective October 1, 1999, the new Housing Choice Voucher Program (HCVP) is the result of the completion of the merger of the old Certificate and Voucher programs into one single, new market-driven program. The new program is designed to make the tenant-based housing assistance program more successful at helping low-income families obtain affordable housing and increase their housing choices. The program is administered in every state throughout the country. Recently HUD has sought to reform the voucher program by introducing the “Flexible Housing Choice Voucher Program.” The reform measure proposes to give local Public Housing Authorities greater autonomy in rules setting and thereby trade administrative efficiencies for program costs. (The Flexible Voucher Program: Why A New Approach to Housing Subsidy Is Needed, 2004) DiPasquale (2003) points out that project housing subsidies cost significantly more than flexible subsidies such as Housing Choice Vouchers. Comparisons of the costs of rental subsidies in metropolitan areas indicate that the cost of a one-bedroom Section 202 unit is about 13 percent higher than the cost of vouchers. Similar tax credit units are about 19 percent more expensive than vouchers in the same areas. Because of the level of services available in project subsidized developments such as section 202 and 811 units, that often are not available in market rate units that can be rented using a voucher, the additional expense of using production subsidies are no doubt justified for severely disabled people. But cost of production is only one consideration when designing a comprehensive array of communitybased living accommodations for people with serious disabilities. The struggle facing most local provider organizations is the lack of appropriate tools with which to fashion an array of housing options focused on the needs of people rather than the needs of developers. Since 1986 the primary housing production incentive used by state and federal governments has been the income tax code seeded with very small amounts of federal block grants such as the HOME program and the Community Development Block Grant. These tools are more a blunt instrument than a surgical scalpel and more often than not are very difficult to use in tandem. In 1986, Congress enacted tax reforms, centered on the passive-loss tax rule of income tax accounting. In doing so, it created the Low Income Housing Tax Credit program as a new investment instrument of tax-motivated soft equity. The Tax Reform Act of 1986 (P.L. 99-514) created the


Low Income Housing Tax Credit Program (LIHTC). Under the LIHTC, developers of rental housing that met certain affordability tests (one-fifth of the units at 50 % of area median income [AMI], or two-fifths at 60 % of area median income) received a ten-year stream of federal tax credits. The value of these credits is converted into equity in the project, thereby resulting in reduced debt and more affordable rents (Development of Analysis of the National Low-Income Housing Tax Credit Database, 1996). By using tax incentives the federal government pulled private capital into the housing subsidy market. The efficiency of the capital market provided remarkable numbers of new “rent controlled” units but often located these units in rural green spaces that were easy to rezone but far from the goods and services, public transportation services and jobs desired by the tenants occupying the apartments. Similarly such placement did little for the community integration needs of people with severe disabilities (Fuller, 2003). Early units were not subject to Fair Housing Laws protecting the right of people with disabilities and HUD was slow to enact regulation once FHA 88 was passed by Congress. The result was nearly a decade of construction that did not meet even the most basic of accessibility standards. Finally when the regulations were published late in 1990 the “Adaptability” compromise reached by HUD and the development community shifted all but the most basic accessibility requirements from the least expensive phase of the building model, the design phase, to the most expensive phase the, renovation or remodel phase and shifted the cost burden onto the tenants, those often least capable of paying for such modification (Fuller, 2003). The National Affordable Housing Act of 1990, created the Home Investment Partnerships Program, or HOME Program. The HOME Program was designed by Congress to replace many direct project subsidies of earlier HUD programs. The program was to provide housing to low-income households and expand the ability of states to implement locally tailored housing strategies to meet local challenges. The principle use of HOME Program funds to the purchase, construction and renovation of rental housing. Many congregate homes have been acquired and constructed using HOME Program funds. Non-profits have also used HOME Program funds to acquire or construct supported living, supervised living and assisted living facilities. Often the HOME Program funds are used collaboratively with Community Development Block Grant funds to build larger more complex projects. HOME Program block grants and Community Development Block Grants are managed and distributed to Public Housing Authorities (PHA) where they exist and through “Balance of State” agencies such as State Finance Agencies or State Departments of Housing and Community Development when no local PHA is present (Walker et al., 1998) (Herbert et al., 2001). While these balance of state agencies and PHAs are the state gatekeepers for the capital funds needed to create housing, Master, R. J., & Taniguchi (1996) point out that the service dollars are almost always funneled through state social service agencies or state Medicaid agencies. Typically these agencies are housed in different secretariats, often do not have any defined mechanism for policy coordination and rarely speak the same language, even though they often serve the same non-profit community service providers. This disconnect has led many researchers and policy analysts to suggest a need for a unified housing policy that draws together housing and support needs of people with serious disabilities across a full spectrum of built environments. The New Freedom Initiative have referred to this change process as “Rebalancing.” The New Freedom Initiative is aimed at promoting full access to community life as a result of the Supreme Court’s Olmstead Decision. Executive Order 13217 (June 18, 2001) directed Federal agencies to work to “tear down the barriers” to community living by developing a government-wide framework for helping provide elders and people with disabilities with supports necessary to engage in productive work, choose where they live and be able to fully participate in community life. (Research of Program Management Techniques taken by States to Rebalance their Long Term Care Systems, 2005) The concept of Rebalancing made clear that addressing the complex housing needs of people with brain injury could not simply be managed by the same housing policy designed to meet the needs of low and moderate income families, which is often the case when state housing policy interprets federal block grants. Most certainly this is the case in the Housing Choice Voucher program. A few more progressive states have taken steps toward a unified housing policy. While each state has a very different approach, they share certain touchstone principles that warrant discussion here.

In 1998, Colorado implemented the Fast Track program to increase the number of persons discharged from hospitals to community-based settings instead of nursing homes. The purpose of the Fast Track program is to address some of the structural problems in the Medicaid system that act as barriers to community placement for persons who have been hospitalized. The focus of the project has been to provide on-site assessment for waiver services and Medicaid eligibility determination within a hospital setting to divert hospital discharges from nursing facility placements when appropriate. The program has adopted a series of accelerated procedures for conducting assessments of hospital patients, for determining financial eligibility for Medicaid, and for approving and arranging for communitybased services. Between July 2000, and June 2001, out of 122 potential fast-track candidates referred by the hospital to the program, 87 (71 percent) were successfully fast-tracked to community settings. (State Medicaid Directors’ Letter, 2002) Under New Jersey’s Community Choice Initiative, the State employs 40 counselors who are exclusively dedicated to informing nursing home residents – and hospital patients awaiting nursing home admission – about HCBS and housing alternatives. The counselors, who are registered nurses and social workers, also provide assistance to residents who express a desire to move out of a nursing home. Counselors are notified as soon as a Medicaid participant enters a nursing home, and start working with the participant on community-based alternatives. Counselors also provide assistance to persons who have been in nursing homes for many years. Between 1998 and 2001, over 3,400 people were discharged from nursing homes with the help of Community Choice. In the first three years of the Community Choice Initiative, New Jersey’s Medicaid nursing home population decreased by 1,500 (5 percent). (State Medicaid Directors’ Letter, 2002) The State of Washington employs numerous innovative mechanisms to reduce the number of nursing home residents on Medicaid. All current residents have the option to receive case management from nursing home case managers to assist them in leaving the nursing home. Washington also helps Medicaid-eligible residents keep their home or obtain and furnish a home after transition. Under post-eligibility treatment of income rules, Medicaid residents can use their own income for up to six months--up to 100 percent of the poverty level--to make rent, mortgage, utility, and other payments to maintain their home in the community. Transitioned nursing home residents also can receive a one-time payment of up to $800 of state-only funds to help with rent, security deposits, utilities, household goods, assistive technology, furniture, or home modifications. To keep the supply of nursing home beds from growing too high, Washington’s certificate of need program includes use of HCBS in the calculation of unmet needs for nursing home beds. As a result of these combined efforts, the number of Medicaid nursing home residents declined by 16 percent (16,234 to 13,693) from July 1995 to July 2000. (State Medicaid Directors’ Letter, 2002) In each of these states the dollars allocated to institutional care were allowed to follow the individual to the most appropriate living arrangement instead of forcing the individual to follow placement to wherever dollars where available. This “Money Follows the Person” principle is imperative to providing the resources necessary to overcome the barriers that impede people from migrating to the least restrictive environment. Dedicated staff was available specifically to facilitate transitions for residents wishing to return to community life. Often people who once lived in institutions and now worked for Centers for Independent Living or Area Agencies on Aging were the best facilitators for such transition. But perhaps most importantly, sufficient flexible dollars were provided to allow the person to establish a community residence tailored to individual needs. The transition facilitators help the individuals coordinate community based supports with appropriate living arrangements. Together this transition team worked with local public housing authorities, non-profit housing providers and local landlords to ensure an appropriate match of supports and housing. This combination of money following people and targeted transition assistance are two principles that build a unified housing policy linking housing policy and social policy that result in people with serious disabilities successfully integrating into communities (Crisp, Eiken, Gerst, & Justice, 2003). In Virginia, under the direction of the Office of Community Integration, a comprehensive housing recommendation includes targeted state housing supports for individuals living in state facilities and nursing homes. BRAIN INJURY PROFESSIONAL

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The targeted supports would be funded by the state and managed by the Department of Social Services. Transition assistance would be provided by the Centers for Independent Living for residents of nursing homes and the Community Services Boards for residents of state facilities. In the most recent report, housing was highlighted as the Oversight Committee called for the establishment of a coordinating position to bridge the housing – social service policy disconnect. “Housing barriers and solutions are complex and require a commitment from the highest levels of government to address. The understanding and collaboration of both state and local housing and human resources agencies and stakeholders is required to develop strategies and coordinate efforts. We suggest that Olmstead issues be featured in future Governor’s Housing Conferences and that we learn lessons from the newly-awarded Transportation and Housing Alliance (THA) Grant of the Thomas Jefferson Planning District Commission, in which the goal is to develop a THA that will serve as a conduit of information, resources, T(echnical) A(ssistance) and education. The THA will make public policy recommendations in the areas of transportation and housing and work to build and improve community infrastructure in localities and statewide. Lastly, we urge you to heed the recommendations that come from the H(ealth and) H(uman) R(esources) Study Report on Housing Opportunities for Persons with Disabilities in Virginia and establish a lead organization or agency to be in charge of coordinating all housing efforts for people with disabilities in conjunction with localities, V(irginia) H(ousing) D(evelopment) A(uthority), D(epartment of ) H(ousing and) C(ommunity) D(evelopment), other relevant agencies and stakeholders to develop a plan for providing housing for people with disabilities that would implement the Olmstead Task Force Report and related housing recommendations” (Second Annual Report of the Community Integration Oversight Advisory Committee, 2005). This recognition that housing for people with serious disabilities must be addressed at the very highest level of policy implementation is a first step to building a unified housing policy that focus the creation of housing stock and housing alternatives that meet a full array of individual needs based on the support needs of the person. This policy shift represents a sea change for state and federal housing policy that traditionally has focused on cost of production as a function of an individual’s ability to pay. Schill & Wachter (2004) found that housing policy at the beginning of 2000 was once again beginning to embrace the social purpose once common place before the wholesale attempt to eliminate HUD in the 1980’s and 90’s. They point out that: “... as the new millennium begins, the situation has changed dramatically. Not only is Congress no longer seriously questioning whether to disband HUD, but, in response to a record-setting economic expansion and internal reforms within the agency, Congress also has substantially increased HUD’s budget. In marked contrast to the beginning of the past decade, remarkable consensus exists among housing policymakers and analysts about the future direction of housing policy. .. In recent years, we have made significant progress in breaking through the parochialism of housing policy and returning it to its roots. Housing policy, as we currently think about it, can trace its parentage to the Progressive era. At that time, housing reformers saw housing as providing not simply physical shelter but also they believed that better housing would have a more general positive impact on its occupants and their communities.” (p. 6) Given this rediscovery of its altruistic roots there seems hope that housing policy can embrace the principles of the Olmstead Supreme Court Decision and begin to reflect a growing understanding that housing is the fundamental cornerstone of successful integration for people with brain injury and other serious disabilities. Without housing, issues like employment, personal assistants and transportation can never provide the supports needed to achieve community integration. Once people with serious disabilities have routine access to adequate housing, then and only then, can communities begin to build the infrastructure of supports necessary to ensure full integration. 16 BRAIN INJURY PROFESSIONAL

Two other fundamental principles of a unified housing policy have perhaps been best framed by Centers for Independent Living: choice and self determination. Both principles have historically been lacking in state and federal housing policy, with one exception – the Housing Choice Voucher program. Choice and self determination are principles that not only facilitate successful community integration but also empower the people most directly affected by housing policy. Researchers have long known and often reported the empowering effects of self-determination and choice. (Segal, Silverman, & Temkin, 1993), (Wehmeyer & Bolding, 1999), (Stancliffe & Keane, 2000),(Wehmeyer & Palmer, 2003). Incorporating this knowledge into housing policy means building capacity within the community of people with disabilities and their allies to undertake the development and management of the built environment. Housing policy must encourage organizations of people with disabilities to use HOME program dollars and low income housing tax credits to build affordable, accessible apartments designed with the flexibilities needed by people with serious disabilities. Additionally, housing policy must encourage a full array of housing types with targeted capital to encourage every type of built environment from congregate housing to home ownership. The movement away from the concept of “a continuum of service” and to a full array of services, rich with choice and self determination is essential to achieving community integration. The array of choices allows for growth and change imperative to building a good quality of life and not unlike the environment those living in communities now expect. Society would scarcely settle for a single grocery chain or a single brand of gasoline. Likewise people with disabilities must have a reasonable expectation of being able to move from congregate housing to supported-living in an independent environment, to home ownership and back again. Housing can be one of the most difficult reintegration issues facing people with brain injuries. Yet improvements in public policy, largely energized by the Olmstead decision are moving communities in the direction of variety and choice which gives people with brain injuries and their families greater choice, the promise of improved living environments and a better quality of life. By bridging the disconnect between housing policy and social policy, state and federal agencies can accelerate progress toward better community integration of people with serious disabilities. A few progressive states have begun taking steps to implement a unified housing policy to bridge the policy disconnect. These states have called for individual transition coordinators to help break down the natural impediments to community integration. Most states have also implemented some type of specific housing subsidy or called for a high level coordinator to direct resources where necessary in a policy shift that has become known as “Money follows People.” In this policy shift, dollars routinely available for institutional care are redirected to provide housing and support service in the environment most appropriate to the individual. Choice and self determination is central to a unified housing policy. Choice allows that people with disabilities have differing likes and dislikes and supports and environment where an array of choice is available. Self determination provides the opportunity for the person with a disability to decide among the array of choices. Being able to exercise choice and self determination builds empowerment that increases the quality of life and encourages growth. Choice and self determination is also an extension of the principle that people with disabilities should be involved and in charge of organizations that use state and federal program capital to build and manage affordable, accessible places to live. Such self direction enhances the community of people with disabilities economically and helps to ensure that the values expressed in the built environments are those embraced by the community of people with disabilities. While much remains to be done, the need for a unified state and federal housing policy that embraces supports for people with disabilities is clear. The policy to integrate people with disabilities into community life must be fundamental in its dedication to self determination, self direction and choice. A housing policy that is silent of community integration or that attempts to fold the needs of people with serious disabilities into a larger policy directed at the needs of low and moderate income people is simply no longer acceptable and has never been effective. A unified housing policy for people with serious disabilities must involve people with serious disabilities in a way that provides control over capital and gives them responsibilities for management. The era of doing for people with disabilities must give way to doing by people with disabilities.


ABOUT THE AUTHOR

Dr. Fuller is the Community Outreach Officer specializing in disability programs and policies at the Virginia Housing Development Authority. He serves as vice-chair of the state Olmstead Implementation Team and as a board member of the Virginia Housing Coalition. Dr. Fuller has worked as an Executive Director of an Independent Living Center and Executive Director of a Community Housing Development Organization. He was recently appointed to the Virginia Office of Protection and Advocacy Board of Directors. Dr. Fuller earned an undergraduate degree in Social Work, a Masters of Business Administration and concentrated his Doctoral research in the area of disability housing policy at Virginia Commonwealth University in Richmond, Virginia.

REFERENCES Crisp, S., Eiken, S., Gerst, K., & Justice, D. (2003). Money Follows the Person and Balancing Long-Term Care Systems: State Examples. Washington, D. C.: U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services’ Disabled and Elderly Health Programs Division. Denise DiPasquale, D. F., & Daniel Garcia-Diaz. (2003). Comparing the Costs of Federal Housing Assistance Programs. FRBNY Economic Policy Review(June), 147 - 166. The Flexible Voucher Program: Why A New Approach to Housing Subsidy Is Needed. (A White Paper)(2004). Washington, D. C.: U. S. Department of Housing and Urban Development. Fuller, W. E. (2003). A Comparative Study of Quality of Life Indicators for People with Disabilities Living in HUD Subsidized Section 811 Supported Housing and Low-Income Housing Tax Credit Multifamily Developments. Unpublished Dissertation, Virginia Commonwealth University, Richmond. Herbert, C. E., Bonjorni, J., Finkel, M., Michlin, N., Nolden, S., Rich, K., & Srinath, K. P. (2001). Study of the Ongoing Affordability of HOME Program Rents (Contract # C-OPC18571). Cambridge, MA.: U.S. Department of Housing and Urban Development, PD&R. Lezak, M. D. (2005). Neuropsychological Assessment. Journal of Personality Assessment, 84(2), 213. Master, R. J., & Taniguchi, C. (1996). Medicare, Medicaid, and People With Disability. Healthcare Financing Review, 18(2), 7. Research of Program Management Techniques taken by States to Rebalance their Long Term Care Systems (2005). CMS. Retrieved October 15, 2005, from the World Wide Web: http:// www.cms.gov Schill, M. H., & Wachter, S. (2004). Principles To Guide Housing Policy at the Beginning of the Millennium. Cityscape: A Journal of Policy Development and Research, 5(2), 21. Second Annual Report of the Community Integration Oversight Advisory Committee. (2005). Richmond: Office of Community Integration. Segal, S. P., Silverman, C., & Temkin, T. (1993). Empowerment and Self-help Agency Practice for People with Mental Disabilities. The Journal of Social Work, 38(6), 706-711. Stancliffe, R. J., & Keane, S. (2000). Outcomes and costs of community living: A matched comparison of group homes and semi-independent living. Journal of Intellectual & Developmental Disability, 25(4), 281-305. State Medicaid Directors’ Letter. (SMDL# 02-012)(2002). Washington, D. C.: CMS. Walker, C., O’Leary, S., Boxall, P., Tatian, P., Katsura, H., Kingsley, G. T., & Timkin, K. (1998). Expanding the Nation’s Supply of Affordable Housing: An Evaluation of the HOME Investment Partnerships Program (UI Project No.: 06323-00000). Washington, D. C.: The Urban Institute. Wehmeyer, M. L., & Bolding, N. (1999). Self-Determination-Across Living and Working Environments: A Matched Samples Study of Adults With Mental Retardation. Mental Retardation, 37(5), 353-363. Wehmeyer, M. L., & Palmer, S. B. (2003). Adult Outcomes for Students with Cognitive Disabilities Three-Years After High School: The Impact of Self-Determination. Education and Training in Developmental Disabilities, 38(2), 131-144.

conferences 2006

2007

SEPTEMBER 14-16 – 19th Annual Conference on Medical and Legal Issues in Brain Injury. Eden Roc Resort, Miami, FL. Contact: conference@nabis. org, web: www.nabis.org.

FEBRUARY 15-17 – Pacific Coast Brain Injury Conference in partnership with the Brain Injury Association of Canada presents Canada’s National Brain Injury Conference. Hyatt Regency, Vancouver, BC, Canada. Contact: (604) 949-0716, www. pcbic.org.

14-16 – NABIS Brain Injury Conference of the Americas at the Eden Roc Resort, Miami, FL. Contact: conference@nabis.org, web: www. nabis.org. OCTOBER 25-28 – 26th Annual Conference of the National Academy of Neuropsychology, Marriott San Antonio Rivercenter, San Antonio, TX. Contact: (303) 691-3694, e-mail: office@nanonline.org, web: www.nanonline.org. NOVEMBER 3-5 – 4th Annual Pediatric Brain Injury Conference. Miami, Florida. Sponsored by the University of Miami Miller School of Medicine. Visit: www.pedibrain.org. 5-6 – 26th Annual Neurorehabilitation Conference on TBI, Stroke and Other Disorders, Braintree, MA. Contact: (781) 348-2113, e-mail: donna.carr@healthsouth.com.

JUNE 10-14 – 4th World Congress of the International Society of Physical Medicine and Rehabilitation, Seoul, Korea. Contact: isprm2007@intercom. co.kr, www.isprm2007.org. 16-19 – Advances in Neurorehabilitation: Part of The Festival of International Conferences on Caregiving, Disability, Aging and Technology (FICCDAT), Toronto, Canada. Contact: catherine@smartmove.ca, www.ficdat.ca. 22-24 – Joint Meeting of WFNR and EMN, Fiuggi, Italy. Contact: fservade@ausl-cesena.emr. it, www.emn.cc. SEPTEMBER 24-27 – 5th World Congress for NeuroRehabilitation, Rio de Janeiro, Brazil. Contact: traceymole@wfnr.co.uk.

More than

Traumatic Brain Injury Serving the community for two decades, Beechwood has expanded its TBI offering to encompass broad neurological services as well as new Behavioral Remediation and Late Adolescent programs. In addition to TBI, we serve individuals with brain damage due to: • Anoxia/Hypoxia due to drowning, heart attack, drug overdose, alcohol poisoning, anesthesia errors, etc.

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

• Stroke For information and admissions, call 1-800-782-3299. Our facilities are adapted to accommodate all levels of accessibility.

REHABILITATION

SERVICES

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

Langhorne, PA • Bensalem, PA BRAIN INJURY PROFESSIONAL

17


BY LEANNE R. CAMPBELL, PhD, SATOKO YASUDA, PhD, KAREN WILEY, LUCY MILLER, SANDY HARDY Introduction and Review of Literature Employment has many positive effects on individuals with disabilities. These include rehabilitation (Melamed, Groswasser, & Stern, 1992(, quality of life ((O’Neill, Hibbard, Brown, et al., 1998(, and social integration, home and leisure, and financial status (Abrams, et al., 1993). Being unemployed has negative effects for individuals with disabilities as well as on society. Not only does lack of success in returning to work affect the lives of these individuals, but the high unemployment rate also becomes a significant social burden. It increases the expenditures associated with Social Security disability benefits such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). High post-injury unemployment rates are persistently being reported. The post-injury employment rates vary widely, ranging from 10% to 70%, whereas the pre-injury employment rates range from 61% to 75% (Ben-Yishay, Silver, Piasetsky, et al., 1987; Fraser, Dikmen, McLean, et al., 1988; Ip, Dornan, & Schentag, 1995; McMordie, Barker, & Paolo, 1990). Traumatic brain injury (TBI) can result in a variety of cognitive deficits, impaired psychosocial functioning, and impaired physical or sensory functioning (Horn, & Sherer, 1999). As a result, individuals with TBI often experience difficulty becoming competitively employed post-injury and maintaining employment for extended periods of time (Asikainen, Kaste, & Sarna, 1998; Curl, Fraser, Cook, et al., 1996; Keyser-Marcus, Bricout, Wehman, et al., 2002; Kreutzer & Morton, 1988; McMordie & Barker, 1988). Much of the prior research has focused on the symptoms and conditions of the individuals that influence returning to work – the measurable, functional deficits that persist in the patient after recovery. It is becoming increasingly important to examine returning to work after TBI as an interaction between the needs and motivations of the individuals with TBI and the supports available within vocational, social and economic environments (Kowalske, Plenger, Lusby, et al., 2000; Ruffalo, Friedland, Dawson, et al., 1999; West, 1995). Factors that lead 18 BRAIN INJURY PROFESSIONAL

to successful employment include socially inclusive work environments and availability of health insurance (West, 1995), level of social interaction on the job and return to jobs with greater decision-making latitude (Ruffalo, et al., 1999), and environmental modifications and focusing on vocational strengths of the individual (Kowalske, et al., 2000). Despite the numerous ways in which employment enhances the quality of life, probably the biggest barrier on the road to employment is the fear of losing disability benefits. An individual is deemed to be engaging in “substantial gainful activity” (SGA) if his or her income exceeds $830 per month (Social Security Administration, 2005). Once a beneficiary has demonstrated a pattern of countable earnings that exceed the current SGA guideline, cash benefits may cease. Even modest gains in employment can put the individual at risk for losing their health care benefits. When the choice is between living in poverty without health care, or being unemployed and receiving federal income assistance and health care, it is rational that the psychosocial rewards of employment will be outweighed by the economic losses that will follow from employment. To alleviate this concern, Congress has enacted a number of work incentives for SSI and SSDI beneficiaries (Social Security Administration, 2000). These work incentives would allow them to keep more of their earnings while retaining their benefits. Some of the most commonly used work incentives include: 1619(a) and (b) Impairments, Impairment Related Work Expenses (IRWE), Trial Work Period (TWP), Plan for Achieving Self-Support (PASS), Extended Period of Eligibility (EPE), and continued payment under a vocational rehabilitation program. However, the Social Security Administration (SSA) reported that these work incentives were underutilized by SSI and SSDI beneficiaries (U.S. GAO, March 1999). The reasons cited for this were: 1) few beneficiaries knew that the work incentives existed; and 2) those who were aware of the incentives thought that they were complex, difficult to understand, and of limited use when entering low-paying employment (U.S. GAO, March 1999).


National BPAO Program The National Benefits Planning Assistance and Outreach (BPAO) program, funded by SSA, was established by the Benefits Assistance Resource Center of Virginia Commonwealth University to provide training and technical support to 117 organizations nationwide. Each project presides over one or more “sites” under which one or more Benefits Specialists advise individuals with disabilities on benefit programs (e.g., Medicare), work incentives (e.g., TWP), and provisions (e.g., Ticket-to-Work), and the federal rules that govern them. The mission of BPAO is to promote and improve self-sufficiency for individuals with disabilities. In this article, the authors focus on employment as one of the primary objectives of BPAO. Characteristics of individuals with TBI who sought services from the BPAO projects are presented as well as a summary of the services, incentives, and recommended provisions. Finally, the authors discuss how an individual’s employment status at intake might impact how, and in what proportion, those services were delivered. The majority of beneficiaries enrolled in the BPAO program seek either to enter the workforce or improve the jobs they currently have. Only 11% of individuals with TBI were unemployed and not seeking employment at the time of enrollment. Nearly all of the individuals with TBI in the BPAO program are of working age; 48% are between age 22 and 39, and 43% are between ages 40 and 59. A fundamental goal of BPAO is to reach out to those individuals with disabilities and provide them with as much assistance, encouragement, and support as possible so that they will be motivated to return to the work force. To illustrate the issues an individual with TBI faces on the road to employment, the authors present a case study of one participant from the New Mexico Work Incentives Now (WIN) BPAO. Case Study Joseph Miller lives alone in Public Housing in a rural New Mexico community, population 9,500. He is 48, unmarried, and employed at the time of enrollment. He did not earn a lot of money at his job prior to the car accident that caused his brain injury, so he was receiving concurrent Supplemental Security Income (SSI) and Disability Insurance (SSDI) benefits at the time of self-referral. Two of Joseph’s sisters were helping him; they were suspicious of the New Mexico WIN BPAO program, because they feared that Joseph would lose his benefits if he talked to the project personnel. Joseph worked at a convenience store at the time of referral. He was concerned about the amount of money he could earn and still retain his benefits. TWP is a work incentive that individuals who receive Social Security benefits can use to test their work skills while maintaining full benefits, despite how much income they earn. There are nine TWP months, and they can occur any time during a rolling period of 60 consecutive months. The only months that count toward the TWP are either those for which the individual earns more than $590, or works more than 80 hours in self-employment. Joseph’s sisters had pressured him to remain under-employed so that he would not use any of those TWP months or put his social security benefits in jeopardy. Joseph’s potential success in obtaining and retaining employment and self-sufficiency required that his sisters be involved in his benefits counseling and that their misconceptions be corrected. A certified specialist, or Benefits Advisor, was dispatched to the community to meet with Joseph and one of his sisters. TWP was explained, and it was emphasized that Joseph did not need to hoard the qualified months. The Benefits Advisor educated the family on countable income, the extended period of eligibility, impairment-related work expenses and subsidy as the means to protect Joseph until he became more self-sufficient. The advisor also taught them about Title XVI benefits, including threshold for that year, but this was not the concern for the family. Joseph’s sister refused to let him sign a benefits planning query (BPQY), because she feared that this would arouse the attention of SSA. They were advised that there was a limited amount of help that the Benefits Advisor could provide if they could not verify Joseph’s benefits. During the following year, Joseph called frequently to ask questions

about TWP, IRWE, subsidy, and most importantly, SSI threshold for Medicare. It is common for those who have TBI to forget what they have been told, and to require many repeated explanations. Last year, Joseph stopped working, due to having surgery for other conditions deriving from his accident, but since his recovery, he has been looking for work. Joseph will go months without calling the Benefits Advisor, then will call daily, asking again and again what the threshold amount for the year is, or if the rules for Subsidized Housing still stand at his Housing and Urban Development agency. Attempts were made to connect Joseph with the brain injury agency in the state. With no local TBI service provider, Joseph must rely on family and local resources. Recently, state legislation was passed to provide TBI Medicaid waiver services in New Mexico, but this program remains in the planning stages.

ONGOING CONCERNS Forgetting – Joseph will frequently not remember what has been told to him, and if information is sent in writing, he will lose it. The Benefits Advisor must have patience in repeating and resending information. Consequently, Joseph finally signed a benefits planning query, because he felt he had someone on whom he could rely and who would give him accurate information. Decision-making – Joseph remembers that he was able to work at a higher level than he has achieved post-injury. He tends to look for jobs as a substitute teacher or manager of a kitchen, which may be out of his ability level. The Benefits Advisor always has to make the referral to the appropriate agency to help with vocational goals, and focus on what happens to his benefits, but not make the decision on what work he can or cannot do. Communication – Communication with the Employment Network (EN) is essential. In Joseph’s case, it was suggested that a PASS be written so that Joseph could obtain a thorough vocational assessment and receive job development, as there are not many EN choices available to him. Family involvement – Generally, the family will either draw away from or over-protect the person with TBI. The Benefits Advisor might want to involve the family as much as possible while simultaneously trying to avoid becoming entangled in family dynamics. Anger/affect management – Joseph has not displayed problems in this area, but several other individuals with TBI find it a problem. Referrals to the mental health or primary care provider can help if this becomes a problem. Sometimes, a Benefits Advisor can find herself at cross-purposes with other care providers. Education of providers or practitioners is necessary to help them understand that Joseph can work and has safety nets as he attempts self-sufficiency. Individuals with TBI Enrolled in BPAO This case study illustrates the need for effective benefits counseling. Many individuals with TBI desire competitive employment, but fear that they would lose most, if not all, of their disability benefits, such as income assistance and health care. Prior to the federal Ticket to Work and Work Incentives Improvement Act (TTWWIIA) of 1999, which established work incentives to address and counteract this vicious cycle, individuals with disabilities were forced to choose between employment and health care. This Act implemented incentives for the individual to attempt to enter, or re-enter, competitive employment, without the fear of losing income assistance or health care benefits. A primary function of BPAO is to ‘get the word out’ about these incentives and to debunk the prevailing myth that employment equals loss of benefits. The National BPAO database contains records for 190,801 individuals with disabilities, 6155 (3%) of which declared TBI as the primary disability. The data presented in this article are current through August 19, 2005. For this discussion, the authors differentiate between the employment status of the individual at intake: employed (part-time or full-time), not employed but seeking employment, and unemployed and not seeking employment. By comparing the group of individuals with TBI to the group having all other disabilities, and by examining their demographic, and by discussing the incentives and provisions BRAIN INJURY PROFESSIONAL

19


recommended to them upon intake, we hope to gain insight about the current vocational interventions, and perhaps more importantly, how best to serve these individuals as they seek competitive employment.

Demographics In the TBI group, individuals seeking services from BPAO projects are largely of working age; nearly 90% are between the ages of 22 and 59, with 44% age 22-39. Of the 3816 individuals with TBI who are unemployed and seeking employment, 43% are under the age of 40 (see Table 1). There are 673 individuals with TBI who were both unemployed and not seeking employment at intake; half of them are under the age of 39. This compares unfavorably with the group of individuals with other disabilities, where 43% of those age 39 and under are not seeking employment. The national average rate of TBI incidence among males is 1.5 times higher than the rate of TBI among females (Langlois, et al., 2004). For BPAO data, TBI incidence among males is 1.7 times higher than the rate for females. Table 2 shows that the gender distribution of individuals with TBI reflects that of the national average of males with TBI. Males comprise 63% of the TBI group. The proportion of males that are either employed, or unemployed but seeking employment, reflect the overall percentages of males in the TBI group. However, the percentage of males with TBI that are unemployed and not seeking employment is somewhat lower (59%). A similar trend is seen among those having other disabilities, where 52% of those

Age Distribution of Individuals by Employment Status at Intake

TABLE 1 Age

Employed TBI

Seeking Employment

(N=1529)

Not Seeking Employment

(N=3816)

(N=673)

Total (N=6018)

Under 22

6.34

6.16

9.81

6.61

22-39

48.07

42.82

39.08

43.74

40-59

42.71

48.66

47.99

47.08

2.88

2.36

3.12

Over 60 OTHER

(N=40995)

(N=110736)

unemployed and not seeking employment are female, when the overall percentage of females with disabilities is 50%. Unemployed females that are not seeking employment do so at a higher rate than average compared to males regardless of disability, but this is more marked in the TBI group. The reason for this may be explained by cultural norms, where there is less expectation for women to work. They may either be married and supported by a spouse or are being cared for by their parents.

Social Security and Other Benets The most prevalent Social Security benefit received by all individuals is SSDI. Table 3 shows that SSDI is more common in the TBI group (60% vs. 53%, respectively), and Social Security Income (SSI) is less common for individuals with TBI (24% vs. 30%, respectively). Unemployed individuals with TBI that are not seeking employment receive a

Distribution of Other Benets Received by Individuals with TBI by Employment Status at Intake

TABLE 4 Other Benet

Employed

Seeking Employment

Not Seeking Employment

Total

Medicare

62.32

57.55

48.30

57.73

Medicaid

50.65

51.11

44.15

50.22

Private Health Insurance

10.37

7.30

5.19

7.84

Subsidized Housing

8.15

9.52

8.15

9.02

Food Stamps

10.82

16.56

12.74

14.68

TANF

0.59

0.83

1.33

0.83

Workers Compensation

0.33

0.76

1.33

0.71

Unemployment Insurance

0.33

0.47

0.30

0.41

Veterans Benet

0.65

1.56

1.63

1.34

Other Benet

9.78

9.00

16.74

10.06

Distribution of Other Benets Received by Individuals with Other Disability by Employment Status at Intake

TABLE 5

2.58 (N=23147)

(N=174878)

Under 22

9.28

8.24

14.84

9.36

Other Benet

Employed

Seeking Employment

Not Seeking Employment

Total

22-39

37.79

32.07

27.89

32.85

Medicare

56.74

53.13

40.37

52.29

40-59

48.19

53.94

49.86

52.05

Medicaid

54.88

52.59

47.32

52.42

Over 60

4.74

5.75

7.41

5.73

Private Health Insurance

7.30

5.07

4.40

5.50

Gender Distribution of Individuals by Employment Status at Intake

TABLE 2 Gender

Employed

TBI

Seeking Employment

(N=1534)

Male

64.93

Female

35.07

OTHER

Not Seeking Employment

(N=3835) 63.65 36.35

(N=41169)

(N=675) 58.52 41.48

(N=111128)

(N=23356)

Total

0.98

1.03

1.00

0.54 0.31

1.25

1.23

36.60

Other Benet

10.94

9.56

16.70

10.83

(N=175653)

52.33

50.44

TABLE 6

Distribution of Recommended Incentives for Individuals with TBI by Employment Status at Intake

Recommended Incentive

Employed

TWP EPE

Total (N=5877)

Social Security Benets Received by Employment at Intake (N=603)

1.13 0.53

0.27

50.10

(N=3764)

0.79 0.31

1.39

50.29

(N=1510)

TANF Workers Compensation

0.37

Female

TBI

16.33

0.80

49.56

Not Seeking Employment

9.59

13.06

0.19

47.67

Seeking Employment

7.61

18.34

Veterans Benet

49.90

Employed

9.61

12.75

Unemployment Insurance

(N=6044)

49.71

SSA Benet

11.08

Food Stamps

63.40

Male

TABLE 3

Subsidized Housing

Seeking Employment

Not Seeking Employment

Total

60.69

65.11

46.07

61.89

58.87

60.89

41.63

58.22

PASS

20.47

21.77

16.15

20.81

IRWE

49.48

52.20

29.04

48.92

SSI

21.26

24.50

25.54

23.77

1619(a)

16.17

17.78

10.67

16.58

SSDI

61.59

59.46

56.05

59.66

1619(b)

31.23

31.76

22.07

30.54

16.57

Medicaid Buy-In

24.84

21.43

17.48

21.86

Blind Work Expense

0.26

0.23

0.15

0.23

30.33

Student Earned Income Exclusion

2.09

1.62

1.93

1.77

Concurrent Other SSI

17.15 (N=39413) 27.68

16.05

18.41

(N=106893) 30.22

(N=20507) 35.99

(N=166813)

SSDI

55.05

53.37

48.75

53.20

Subsidy Development

19.56

18.90

11.11

18.20

Concurrent

17.27

16.41

15.26

16.47

Extended Medicare

32.01

36.25

22.07

33.59

20 BRAIN INJURY PROFESSIONAL


lower percentage of SSDI and a higher percentage of concurrent benefits. Benefits specialists speculate that the complex nature of concurrent benefits may itself be the disincentive to obtain employment. When the impact of employment is explained to concurrent beneficiaries, they become confused, wary, and ultimately, disinterested. Employed individuals with TBI receive more Medicare and less Medicaid than their counterparts with other disabilities (Tables 4 and 5). Medicaid is available immediately upon receipt of SSI. Medicare requires the beneficiary to fulfill a two-year Medicare Qualifying Period (MPQ) before health benefits begin. If beneficiaries with TBI are seeing benefits specialists soon after injury, or soon after receiving benefits, they would not have Medicare yet, since the MPQ was not yet served. While the person is waiting to qualify for Medicare, he or she can get Medicaid if he or she is financially eligible for some category of coverage. Presumably, an individual with TBI is referred to benefits counseling early in the disability process, such as immediately after his or her initial rehabilitation program. If this is the trend, then the MPQ would not be served, which means the incidence of Medicare coverage would be lower among persons with TBI.

Recommended Incentives for Individuals with Other Disabilities by Employment Status at Intake

TABLE 7 Recommended Incentive

Employed

Seeking Employment

Not Seeking Employment

Total

TWP

54.52

57.49

36.58

54.01

EPE

52.46

53.35

32.50

50.37

PASS

18.42

20.29

13.97

19.01

IRWE

46.19

47.71

25.52

44.40

1619(a)

17.73

18.32

11.45

17.27

1619(b)

33.96

34.53

23.59

32.94

Medicaid Buy-In

24.00

19.37

12.46

19.53

Blind Work Expense

2.04

1.48

1.09

1.56

Student Earned Income Exclusion

2.62

2.33

4.04

2.63

Subsidy Development

15.32

13.02

7.70

12.85

Extended Medicare

29.68

30.91

17.60

28.85

TABLE 8

Distribution of Recommended Provisions for Individuals with TBI by Employment Status at Intake

Recommended Provision

Employed

Seeking Employment

Not Seeking Employment

Total

Property Essential to Self Support

5.28

4.56

2.22

4.48

Expedited Reinstatement of Benets

28.75

29.86

18.37

28.29

Ticket-To-Work

30.51

42.89

27.70

38.05

Continuing Disability Review Protections

17.14

21.51

14.96

19.67

Section 301

7.76

8.34

9.33

8.31

Unsuccessful Work Attempt Provision

9.97

12.54

6.52

11.22

Distribution of Recommended Provisions for Individuals with Other Disabilities by Employment Status at Intake

TABLE 9

Recommended Provision

Employed

Seeking Employment

Not Seeking Employment

Total

Property Essential to Self Support

4.65

4.39

2.65

4.22

Expedited Reinstatement of Benets

26.17

26.89

15.73

25.24

Ticket-To-Work

30.51

46.60

26.88

40.21

Continuing Disability Review Protections

16.53

20.87

14.70

19.03

Section 301

5.35

6.58

5.94

6.21

Unsuccessful Work Attempt Provision

8.40

9.91

6.64

9.13

Recommended Incentives and Provisions Tables 6 and 7 show that benefits counselors recommend the following incentives more frequently to individuals with TBI regardless of employment status at intake: TWP, EPE, PASS, IRWE, Subsidy Development, and Extended Medicare. These work incentives are referred only to SSDI recipients. Persons with TBI receive more SSDI (60% vs. 53%, respectively), so those incentives are recommended more often. The incentives less commonly referred to individuals with TBI, regardless of employment status at intake, are 1619(a) and 1619(b). The 1619(a) and 1619(b) work incentives are recommended only to SSI recipients, and persons with TBI receive a lower percentage of SSI benefits than do those with other disabilities (24% vs. 30%, respectively). Provisions are recommended to beneficiaries in roughly equal proportions regardless of disability, but there are some exceptions. Individuals who are not seeking employment receive fewer referrals to all of the provisions than beneficiaries who are either employed or unemployed and seeking employment. Benefits counselors tend to discuss Ticket to Work benefits only with those individuals with TBI who are employed or express interest in becoming employed. Individuals with TBI who are employed or seeking employment receive more recommendations for Section 301 and Unsuccessful Work Attempt (UWA). Section 301 allows a beneficiary to retain their benefits while completing an approved vocational program. To receive the Section 301 provision, medical recovery must be a possibility. It is possible that clients receiving Section 301 are in the process of being re-trained, or are attending school while working, and run a higher chance of SSA finding them no longer disabled upon review. Section 301 protects them from loss of benefits should this happen. Persons with TBI get referred to UWA more frequently because they might be expected to try to return to work. Benefits Specialists may assume that these individuals’ attempts to work will be short in duration and unsuccessful. Perhaps TBI beneficiaries tell the specialists that they have tried to work in the past, and it was unsuccessful. Individuals with TBI who are seeking employment receive fewer referrals for the Ticket-to-Work (TTW) than do those with other disabilities. Perhaps TBI beneficiaries are saying they do not plan to work at a substantial level which would result in the loss of benefits. If a person only wishes to work part-time and is not willing to give up cash benefits, they are not considered a good TTW candidate. Limitations and Conclusion Researchers are just beginning to look at retention, and few studies currently exist. BPAO would help folks determine the best way to get prolonged job tenure without jeopardizing their benefits such as Medicaid. The cohort that does not wish to work should be studied in more detail to ensure that the barriers they perceive are not imaginary. A followup analysis on the BPAO TBI cohort would be tremendously beneficial to the body of knowledge. An empirical analysis of the link between benefits counseling and successful employment outcomes might provide a useful starting point to design more effective approaches to counsel persons with TBI, or to provide employment counseling to persons with TBI. Over 60% of individuals with TBI enrolled in BPAO are unemployed and want to work. A mere 11% of them are unemployed and not seeking jobs. The disincentives for individuals with TBI to return to work are slowly crumbling as benefits counseling becomes more prevalent. ABOUT THE AUTHORS

Leanne Rachelle Campbell is a biostatistician and research associate for the Rehabilitation Research and Training Center at Virginia Commonwealth University (VCU) in Richmond, Virginia. Previously, Dr. Campbell was a graduate assistant in the Department of Biostatistics at VCU and has worked as a SAS programmer and freelance consultant. Dr. Campbell received a B.S. in Mathematical Sciences from Shawnee State University in Portsmouth, Ohio, and a Ph.D. in Biostatistics from VCU. Dr. Satoko Yasuda is a research associate (assistant professor) at the Rehabilitation Research and Training Center at Virginia Commonwealth University. She has been involved in examining return to work efforts for individuals with traumatic brain injury and spinal cord injury and has numerous journal publications as well as book chapters. Her other interests include post-secondary education for individuals with disabilities. BRAIN INJURY PROFESSIONAL 21


Karen Wiley works as a Benefit Specialist under the Social Security Administration’s Benefit Planning, Assistance, and Outreach program. Previously she worked 11 years as a clinical therapist at a community mental health associates working with people that have mental health, substance abuse, and sexual abuse issues. She received her BA at Benedictine College, in Atchison, KS and her MA in counseling psychology from Eastern New Mexico University. She currently resides in Santa Fe, NM. Prior to joining the Benefits Assistance Resource Center at Virginia Commonwealth University as a Trainer and Technical Assistance Liaison, Lucy Axton Miller served as the Vice President of Development for Career Resources, Inc., a nationally recognized leader in One-Stop and Welfare-to-Work services in the greater Louisville metropolitan area. Prior to this, Lucy worked for over 10 years at Seven Counties Services, the regional planning authority for mental health, mental retardation and chemical dependency services. Lucy has over 16 years of experience in supported employment implementation and management for adults with the most severe disabilities in both urban and rural settings. Sandy Hardy is a Project Director at Imagine Enterprises in Abilene, Texas. Ms. Hardy is also a Project Director for the National Benefits Planning, Assistance, and Outreach (BPAO) program at Virginia Commonwealth University (VCU), offering technical assistance and training to the benefits counselors who provide benefits planning, assistance and outreach services to 94 county regions in West Texas. Additionally, Ms. Hardy is the BPAO Region IX Technical Assistance liaison and provides training on Social Security work incentives to the BPAO and Protection & Advocacy (PABSS) projects in California, Arizona, Nevada, Hawaii, Guam, American Samoa, and the Northern Mariana Islands. Ms. Hardy has over 25 years of experience assisting people with disabilities, and for the last 15 years has focused primarily on employment services.

REFERENCES Abrams, D., Barker, L. T., Haffey, W., et al. (1993). The economics of return to work for survivors of traumatic brain injury: Vocational services are worth the investment. Journal of Head Trauma and Rehabilitation, 8(4), 59-76. Asikainen, L., Kaste, M., & Sarna, S. (1998). Predicting late outcome for patients with traumatic brain injury referred to a rehabilitation programme: A study of 508 Finnish patients 5 years or more after injury. Brain Injury, 12(2), 95-107. Ben-Yishay, Y., Silver, S. M., Piasetsky, E., et al. (1987). Relationship between employability and vocational outcome after intensive holistic cognitive rehabilitation. Journal of Head Trauma Rehabilitation, 2(1), 35-48. Curl, R. M., Fraser, R. T., Cook, R. G., & Clemmons, D. (1996). Traumatic brain injury vocational rehabilitation: Preliminary findings for the coworkers as trainer project. Journal of Head Trauma Rehabilitation, 11(1), 75-85.

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Fraser, R. T., Dikmen, S., McLean, A., et al. (1988). Employability of head injury survivors: First year post injury. Rehabilitation Counseling Bulletin, 31, 276-288. Horn, I. J., & Sherer, M. (1999). Rehabilitation of traumatic brain injury. In M. Grabois, S. J. Garrison, K. A. Hart, L. D. Lehmkuhl, (Eds.), Physical medicine and rehabilitation: The complete approach, (pp. 1281-1304). Cambridge: Blackwell Science. Ip, R. Y., Dornan, J., & Schentag, C. (1995). Traumatic brain injury: Factors predicting return to work or school. Brain Injury, 9(5), 517-532. Keyser-Marcus, L., Bricout, J., Wehman, P., et al. (2002). Acute predictors of return to employment after traumatic brain injury: A longitudinal follow-up. Archives of Physical Medicine and Rehabilitation, 83, 635-641. Kowalske, K., Plenger, P. M., Lusby, B., et al. (2000). Vocational reentry following TBI: An enablement model. Journal of Head Trauma Rehabilitation, 15(4), 989-999. Kreutzer, J., & Morto, M. V. (1988). Traumatic brain injury: Supported employment and compensatory strategies for enhancing vocational outcomes. In P. Wehman & S. Moon (Eds.), Vocational rehabilitation and supported employment (pp. 291-311). Baltimore: PH Brookes. Langlois J.A., Rutland-Brown,W., & Thomas, K.E. (2004). Traumatic Brain Injury in the United States: Emergency Department Visits, Hospitalizations, and Deaths. Atlanta (GA): Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. McMordie, W. R., Barker, S. L., & Paolo, T. M. (1990). Return to work after head injury. Brain Injury, 4(1), 57-69. McMordie, W. R., & Barker, S. L. (1988). The financial trauma of head injury. Brain Injury, 2, 357-364. Melamed, S., Groswasser, Z., & Stern, M. J., (1992). Acceptance of disabilities, work involvement and subjective rehabilitation status of traumatically brain injured patients. Brain Injury, 6, 233-244. O’Neill, J., Hibbard, M. R., Brown, M., et al. (1998). The effect of employment on quality of life and community integration after traumatic brain injury. Journal of Head Trauma Rehabilitation, 13(4), 68-79. Ruffolo, C. F., Friedland, J. F., Dawson, D. R., et al. (1999). Mild traumatic brain injury from motor vehicle accidents: Factors associated with return to work. Archive of Physical Medicine and Rehabilitation, 80, 392-398. Social Security Administration (2000). SSI recipients who work. [On-line]. Available: http://www. ssa.gov/statistic/ssi_qtrly/index.htm. Social Security Administration (2005). Substantial Gainful Activity. [On-line]. Available: http:// www.ssa.gov/OACT/COLA/SGA.html. Thurman, D. J., Alverson, C., Dunn, K. A., Guerrero, et al. (1999). Traumatic brain injury in the United States: A public health perspective. Journal of Head Trauma Rehabilitation, 14(6), 605-615. U.S. Government Accounting Office (March 1999). Social security disability: Multiple factors affect return to work (GAO/T-HEHS-99-82). Washington DC: Author. West, M. (1995). Aspects of the workplace and return to work for persons with brain injuries in supported employment. Brain Injury, 9, 301-313


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ENHANCING ACADEMIC AND CAREER SUCCESS FOR COLLEGE STUDENTS WITH TBI: VCU’s Academic and Career Exploration-Individualized Techniques (ACE-IT!) Model BY LORI W. BRIEL, M.ED, SHANNON MCMANUS, M.ED, ELIZABETH EVANS GETZEL, M.A. INTRODUCTION

Through a combination of legislative, social and academic changes over the past 20 years, greater numbers of students with disabilities elect to pursue a college education today (Blackorby & Wagner, 1996; Gajar, 1992; 1998: Wagner & Blackorby, 1996). Eleven percent of undergraduate students reported having a disability in 1999-2000 (NCES, 2003). Additionally, results from a National Longitudinal Transition Study-2 from 1987-2001 reflect that growing numbers of students across all disability categories include higher education programs as transition goals. (Wagner, Cameto, & Newman, 2003). According to the Bureau of Labor Statistics projections for 2006, 18 of the top 25 occupations, those with the fastest growth, higher pay and low unemployment will require at least a bachelor’s degree. (Berry, 2000). Students with disabilities seek a college degree with the hope of attaining greater earnings, benefits, social status, marketability, and career advancement. As the number of college students with disabilities increases, a growing presence on college campuses includes students with brain injury (Ruoff, 2001). The highest incidence of brain injury occurs among youth and young adults between the ages of 15 and 24, traditionally when many are considering vocational options, applying to colleges, or beginning a postsecondary education program. The sudden onset of a brain injury may cause a severe interruption in the traditional completion of academic requirements and often results in a readjustment of career goals. Individuals successful in manual labor positions pre-injury may need to redefine a career goal involving less physical requirements post injury. Other individuals with professional career goals pre-injury may need to adjust their goals post-injury to focus on their altered strengths and abilities. Although more students with disabilities are enrolling in college, these students are less likely to remain in college and receive a degree than those students without disabilities (Horn & Berktold, 1999). The retention issues as well as the steady growth in enrollees of students with disabilities generates interest on college campuses regarding how to meet the educational and career development needs of students. There is a growing body of literature studying the need for various models of service delivery on college campuses to serve students with disabilities (Getzel, Briel& McManus, 2003; Gugerty & Duffy, 2005; Getzel, Stodden, & Briel, 2001). This article discusses the common challenges of students with disabilities in higher education and describes a supported education/career planning model called Academic and Career Exploration24 BRAIN INJURY PROFESSIONAL

Individualized Techniques (ACE-IT!) used at Virginia Commonwealth University. The purpose of the model is to determine what specific academic and career interventions will enable students with traumatic brain injury (TBI), spinal cord injury, and other disabilities to meet their academic and career goals.

Academic & Career Challenges

Due to the complex nature of brain injuries, it may be months post injury or even longer before the educational problems associated with a brain injury can be identified or the impact on school performance determined (Clark, Russman, & Orme, 1999). Although the individual consequences of TBI vary greatly and depend on the student’s pre-injury level of functioning, severity and location of injury, and recovery time post-injury, there are four primary domains of learning that are often affected (Keyser-Marcus, Briel, Sherron-Targett, Yasuda, Johnson, & Wehman, 2002). These domains include communication skills, concentration and attention, memory, and executive functioning all of which can significantly affect success in higher education and beyond into employment. As a result, students with TBI may have problems directing the implementation of support services. One of the greatest barriers is their inability to recognize their limitations and to seek help. Even when a student is able to recognize his or her ability to function effectively in an academic environment, he or she may not be able to use this information to design remediation strategies. In addition to learning challenges, college students with traumatic brain injury encounter many of the same academic and career challenges that face other students with disabilities (Ruoff, 2001). These students now become one of potentially hundreds of students that are seeking services through a Disability Support Services (DSS) office on campus. Students are responsible for requesting their supports and services, providing documentation to receive these accommodations, and interacting with faculty to implement their supports. Along with these increased responsibilities, students with disabilities must also adjust to an educational environment much different than their secondary school experiences, including instructor-student ratio, less contact with instructors, expectations of higher levels of academic competence, fewer tests covering broader base of knowledge, changes in personal support systems, and greater expectations to achieve independently. These changes have in part contributed to students with disabilities feeling overwhelmed


and unable to complete their advanced degree program, which results in low retention and completion rates (Getzel, et al., 2001). Additionally, there are institutional factors that may impact students’ ability to successfully remain in school to earn a degree. Because of the increased number of students with disabilities entering postsecondary programs, the range of services provided by postsecondary institutions are still relatively new and not yet well known by faculty members (Getzel, et al., 2001; Mellard, 1994; Minskoff, 1994; Wilson, Getzel & Brown, 2000). Faculty and other stakeholders may find it difficult to accommodate students simply because they lack an understanding of students’ needs or familiarity with campus services (deFur & Taymans, 1995; Scott, 1996). Students with disabilities need a solid understanding of their disability and the impact on learning, communication, and performance in daily life. Students also need the advocacy skills to address faculty and employer fears through the provision of educational information and accommodation solutions. Students with disabilities must determine if, when, and how to disclose disability to the university and an employer. Faculty members, administrators, and employers may have negative or prejudicial attitudes towards individuals with disabilities (Allen & Carlson, 2003; Greenbaum, Graham, & Scales, 1995; West, et al., 1993; Wilson, et al., 2000). In too many instances, students with disabilities feel that they do not belong in advanced educational programs because of the need to self-identify for specific services. As a result, students may elect not to disclose their disability to the university in order to avoid being labeled as having a disability (Gordon & Keiser, 1998; NCSPES, 2000b). Training, counseling, and resources need to be available to students in order to make an informed choice in this matter and to acquire the necessary skills to disclose effectively. Not only do college students with disabilities face traditional academic challenges, they also lack the necessary worksite experiences to fully understand the impact of disability on career choice or to determine what strategies, technology, or supports might be needed on the job (Getzel, Briel, & Kregel, 2000). With extra effort being required to complete academic requirements, time may be minimal to coordinate workplace experiences such as part-time jobs or job shadowing. Traditional summer work opportunities may be replaced by the fulfillment of academic requirements. Ironically, many students with disabilities learn best through experiential learning, yet are excluded from established internship programs due to GPA requirements (Briel & Getzel, 2001). Another factor to consider for career success is that many of the traditional classroom accommodations may not transfer to a work setting. For example, it is not reasonable for employees to regularly request extended time for assignments or ask that all directions be in writing. As students begin the pursuit for employment, it is important to look at how students can assume responsibility for their disability, compensate on the job, and manage the impact of the disability to increase productivity and efficiency. These skills include understanding the impact of disability on work performance, identifying workplace solutions or accommodations, and articulating this information to the hiring supervisor in an effective manner.

support services and developmental classes. Moderate programs have coordinated services, and students are fully included into their academic studies. An intensive program provides a specialized service component and an advocacy component. Some universities and colleges are testing new models of service delivery for all students, designed to provide more individualized and ongoing services to assist students to manage their educational program.

MEETING THE NEEDS OF COLLEGE STUDENTS WITH DISABILITIES

The second component identified is student recruitment (Mowbray, et al, 1993). It is essential that students with disabilities learn about the range of available supports and services on campus and how to get access. Several recruitment strategies are used to recruit students in need of a supported education program. Most of the student participants are recruited through the University’s Disability Support Services Office (DSS) and identified by the DSS staff as needing more individualized and intensive services. Typically, these students are seeking assistance through the DSS office because they are failing in one or more classes, on academic probation, or significantly behind in their course work. Students are also referred to the program through faculty members, counseling center staff, students, or other staff on campus. Identifying and recruiting students with traumatic brain injury on college campuses is not as straightforward as it may seem. It is likely that many individuals elect not to disclose their disability to the disability support services office for a variety of reasons. Students may not be aware

To meet the educational and career support needs of students, disabilities support services offices across the country face the need to provide more varied and specialized services to meet the increased demand for these services. Typically these programs can be categorized by level of services offered as in minimal, moderate, or intensive (Brinckerhoff, et al., 1993; Mooney, 1996). Minimal programs offer general academic

FIGURE 1

Academic and Career Development Needs of Students with Disabilities

Understand and accept disability Build self-esteem and condence Learn about disability’s impact on learning and in work environment Become familiar with compensatory strategies and assistive technology Learn about protections afforded and responsibilities under ADA Learn how to self-disclose and request accommodations Learn about academic and workplace supports through community resources Learn how to deal with insensitive faculty and employer comments and attitudes

Virginia Commonwealth University’s ACE-IT! Model

The expansion of services to assist students with disabilities in partnership with the DSS office is an approach that Virginia Commonwealth University (VCU) has developed. The idea for the model resulted from an evaluation of services and supports provided on the VCU campus that recommended an expansion of supports for students with disabilities. The development of this model uses supported education principles and is designed to study the educational and career interventions most effective for students with TBI and SCI. The intent of the project, funded through the Commonwealth Neurotrauma Initiative (CNI) Trust Fund is to enhance services for college students with traumatic brain injury and spinal cord injury. The CNI Trust Fund resulted in collaboration with the state department of motor vehicles. The license renewal fee collected from individuals who had received a drunk driving offense ($25) was deposited in this fund enabling 13 projects designed to enhance services for individuals with TBI and SCI to be funded across the state.

Principles of the ACE-IT! Model

The model developed by VCU uses the principles of existing supported education models originally developed for individuals with psychiatric disabilities or attention deficit hyperactivity disorders. The principles of a supported education model emphasize a consumer-driven, individualized support system utilizing community and university resources. The model structures these resources around the students’ career choice to help them meet both their short- and long-term goals (Cooper, 1993; Egnew, 1993; Unger, 1998). It was decided that the model at VCU would be designed to provide supports within the current disability support services structure on campus, using both university and community resources. This would enable students to receive services as part of their typical experience on campus.

COMPONENTS OF SUPPORTED EDUCATION PROGRAM

Linking with Community Resources

Mowbray and colleagues (1993) identified five components for building and implementing a supported education program. The first is establishing and using critical community linkages. Creating these linkages helps to blend community and university resources to provide a range of supports for students who may be in need of specialized services beyond those available only on campus. The ACE-IT! model has a strong emphasis on linking community resources to students while they are in college.

Recruiting Students

BRAIN INJURY PROFESSIONAL

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of the impact of their disability on learning, may not want to identify as having a disability, or may not be aware of the process involved and the benefits of receiving accommodations. Information was disseminated throughout the campus using the University’s web site, student organizations, student and university publications, electronic bulletin boards, and in residence halls. The program also provided information to community partners in rehabilitation, brain injury association newsletters, independent living centers, parent associations, and support groups to inform them of the supported education program. To reach more of the target population, the project initiated the development of a consortium of community colleges and universities to further assess the unique academic and career development needs of this particular population. The consortium consists of two historically black four-year universities, two community colleges, and one private four-year college.

Connecting to Campus and Community Resources

The ACE-IT! model creates connections to community-based services and to the business sector. Establishing a link to the community through participation in support groups, rehabilitation services, and independent living organizations prepares students to understand and utilize the adult service system before exiting higher education. Connections to the business community take the form of creating informational interviewing opportunities, job shadowing and internship experiences. Because the supported education model provides services around a student’s career choice, linking to the community becomes an important part of the supports provided.

Strengthening Academic Skills

The ACE-IT! model targets five key areas when providing supports for students with traumatic brain injuries. The focus areas include identifying and promoting the utilization of effective accommodations, connecting students to existing campus and community resources, strengthening academic skills, exposure to technology, and gaining work experience.

Students with traumatic brain injury in higher education sometimes find that the academic strategies they used pre-injury are not effective post-injury. These students may be surprised when they receive their test scores, feeling that their test scores did not reflect their efforts in studying. Individuals with traumatic brain injury may need to explore new learning strategies post-injury to meet the demanding curriculum. Additionally it is often beneficial for some students to initially enroll in only one or two classes to further identify current skills. The VCU ACE-IT! model works with students to strengthen their academic skills by utilizing their strengths to compensate for the impact of their disability. Examples of the types of academic/career skills strengthened in the program are in Figure 2. An example of how academic skills are strengthened is illustrated in the case of Joe, a student who acquired a traumatic brain injury in the midst of his college experience. Joe felt that he had spent sufficient hours reading and studying the class material; however, his test grades did not reflect his efforts. VCU staff and Joe began by analyzing a test that he had recently taken in order to identify any patterns of error. After analyzing the test, Joe realized that he was recognizing the information, but was not committing the information to memory. He was having difficulty with the vast amount of information he had to memorize. Learning strategies explored included active reading strategies, reviewing the accompanying textbook web sites and sample quizzes, developing flash cards for key terms, creating cell charts to organize information, and developing a constant review plan. Not only was Joe able to better organize the information, hence making it easier to retrieve the information, but he also used the cell chart as a way to check his memory.

Identifying and Using Accommodations

Exposure to Technology

Developing an Academic/Career Plan

The third component of the program is the intake of students (Mowbray, et. al, 1993). Specific services are designed around each student’s expressed and documented need using an academic/career plan. The plan serves as a mechanism to help guide students through their academic course work and career preparation. A student-centered plan is generated that focuses on students’ preferences and needs.

Implementing the Academic/Career Plan

The fourth component of the program is implementing the services and supports to address the needs identified on the plan. The VCU model is student-centered and self-directed. Student participants can determine the amount of assistance and support they receive. Students and program staff discuss how often they should meet to discuss any problems that may be occurring, or to follow-up on the effectiveness of the supports or strategies identified. If specific strategies are not working for a student, the staff and student meet to develop alternative methods and incorporate these changes in the student’s plan.

AREAS OF PROGRAM SERVICES AND SUPPORTS

Students with acquired disabilities, such as those with psychological disorders, traumatic brain injuries, and health disorders, must develop a practical understanding of their disability and the impact on daily life. Often the recovery efforts for individuals with traumatic brain injury focus on physical aspects, with little attention paid to cognitive processes or interpersonal effects. Students may learn after receiving a failing grade that their ability to process, retain, and apply new information has changed. This awareness of the effects of the disability can occur after enrolling in a particularly difficult course or through an internship experience in which different demands placed on the student prove challenging. Discussing the individual experiences of students and providing resource information about brain injury is a first step in increasing awareness and acceptance of disability. Students with disabilities may also have difficulty obtaining and utilizing their accommodations. Reasons for not using accommodations include not knowing the process for receiving accommodations, being embarrassed about having a disability, or trying to be successful without using accommodations. The development of self-advocacy skills begins with a foundation level knowledge of the disability and awareness of the practical impact in all areas of life. Students and staff need to include a review of recent neuropsychological evaluations to determine the best learning style for the student in order to build on his or her strengths. For example, an individual with strong visual memory and poor auditory memory may consider requesting a note taker for a classroom accommodation. Alternatively, he or she may find tape recording class lectures useful allowing for repeated listening to develop personal notes. 26 BRAIN INJURY PROFESSIONAL

A key component of the VCU ACE-IT! model is the exploration and utilization of technology to assist students with their academic coursework and performance on the job. In the last decade, there have been tremendous advances in the area of technology to enable individuals with disabilities to read, write, communicate, and work with greater ease and efficiency (National Organization on Disability, 2002; Langton & Ramseur, 2001; Senator, 2000). College students with disabilities need access to technology that promotes positive career outcomes; a medium to learn how to use the technology in the most effective way; and a seamless transition as students move from academia to career environments (Burgstahler, 2003). As a result of implementing the program, staff members have found that a majority of students with brain injury have had little to no experience with assistive technology prior to entering college. Examples of the types of technology used in the program are in Figure 3. These types of technology are used in a myriad of ways depending on the task and each student’s needs, strengths, weaknesses, and familiarity with technology. During the development of the academic/career plan, the staff member and student decide if and what technology options might be the most suitable and effective in compensating for their disability. The technology is demonstrated and customized to meet the student’s unique needs. Following the demonstration a practice session is held with the student to try the technology with the assistance of the program staff. This enables the student to learn how to correctly use the technology and to determine if it is suitable for the student’s needs. It also increases the likelihood that the technology will be used by the student


FIGURE 2

Examples of Strengthening Academic/Career Skills

Writing strategies Reading skills Proofreading strategies Memorization strategies Test taking strategies Time management strategies Organizational strategies Video taping for self-evaluation

FIGURE 3

Types of Technology Explored

Text-to-speech software Speech-to-text software Personal Digital Assistants Develop templates for recording information Graphic organizer software Word prediction software Handheld speller Digital recorders Textbook websites Utilization of features already available on computers (spell check, grammar check, zoom, etc.)

and not abandoned should the student encounter difficulties in using it. Should students face problems with the technology, the staff immediately meets with them to determine what are the issues and potential solutions. The use of technology has been applicable in the academic and work setting. An illustration of how technology is explored and used in the program is in the case of Joan, who is a student with multiple disabilities, including TBI, attention deficit/hyperactive disorder, prior history of substance abuse, and depression. Joan had difficulties with time management. She wrote important information on scraps of paper but would often lose the pieces of paper or forget to check her notes, and hence would end up missing deadlines. Additionally, she was not utilizing her accommodation of taking a test in a limited distraction room because she could not remember to contact the DSS office one week prior to the test in order to secure the room. Staff members and Joan explored a personal digital assistant (PDA). After providing instruction on how to use the PDA, the student was given a PDA on a loan basis and all of her assignments, tests, quizzes, and papers were inputted into the device. Joan set up reminders for each area in order to receive a visual and auditory reminder of due dates. In particular, she set up reminders for her test date to go off one week in advance of the actual date so that she would remember to contact the DSS office to secure a testing room. On a broader scale, career centers and disability support services offices have recognized a need for updated technology in their career centers, learning centers and support offices to meet the needs of students with traumatic brain injuries and spinal cord injuries. Through development of the CNI college consortium, the project has funded an institutional membership to Recordings for the Blind and Dyslexic to access texts in alternate format and a universally designed workstation in a career center lab to allow for adjustments for all users. Additionally speech-to-text and text-to-speech software for use in a career center lab and learning center were also purchased and installed.

Gaining Work Experience

Internship and work experience opportunities are instrumental in shaping the career path for individuals with disabilities. Students who engage in several career-related work experiences while in college, including internships, are able to secure employment more quickly after graduation, are more likely to be employed within their field of study, and are generally more satisfied in their work positions than graduates with no career related experience (Kysor & Pierce, 2000). Internships provide an excellent opportunity to assess the current and future support needs for individuals with disabilities (Getzel, Briel, & Kregel, 2000). Providing experiences for students to explore areas of interest, practice disclosing disability, determine effective accommodations, and make valuable connections with employers must be integrated into the college career planning process. Some students with disabilities are able to self accommodate during their academic course of study but identify problem areas when applying knowledge and acquiring performance skills at a work site. For example,

Stella was a graduate student with a brain injury and a substance abuse disorder who achieved a 3.0 GPA but received a failing grade on a clinical placement. She was unaware of her impulsive behaviors and inappropriate conversations with colleagues and clients. Program staff worked with Stella to understand her disability and how it impacted her interpersonal relationships, develop clear boundaries for professional interactions, and provide opportunities to practice these skills. Stella participated in a week long job shadow opportunity through the VCU Alumni Externship program. With support, Stella was able to disclose her disability to her supervisor and share the specific behavioral goals she was targeting for the week. Following this experience, program staff assisted in securing a work site in which Stella could practice her clinical skills for a longer time-period. The supervisor agreed to provide clear and regular feedback to the student.

Student Profile

Nick is a 26-year-old male who sustained a severe traumatic brain injury and multiple traumas as the result of a motor vehicle accident 5 years ago. At the time of injury, Nick was a college sophomore who studied biology. He also worked part-time as a veterinarian’s assistant and was a member of the Army National Guard. As a result of the injury, he was in a coma for eight days. He was hospitalized for one month and attended day rehabilitation for two months. Through cognitive retraining sessions, Nick identified some learning strategies that were effective for him in his daily life. These included reviewing information several times, developing acronyms to assist with recall, and using humor paired with associations. Medical records and a neuropsychological evaluation conducted approximately nine months post-injury documented the following problems: loss of vision in the right eye, slowed motor reaction time, reduced stamina and fatigue, changes in memory, difficulties with word retrieval, problems with keeping track of time, and a reduction in self confidence. Reports also indicated distress associated with changes in his thinking and concerns about managing his temper. It was recommended that Nick return to work and school on a part-time basis. Approximately one-year post injury Nick decided to return to school. To refresh his skills, he repeated a biology class at a community college. Then, he returned to the university and enrolled in four science courses. Nick failed all four classes and was placed on academic probation. The increased educational demands at the university proved difficult. The next semester, Nick enrolled in a college orientation and study skills course. Significant to Nick was practical information about ways to improve reading comprehension, like identifying key information and taking notes. He also learned to schedule regular study times in a quiet place. Additionally Nick was referred to the ACE-IT! model at VCU during the middle of the semester. Program staff worked with Nick to identify useful campus resources, technology, and to develop time management strategies. The supported education staff met with Nick and recommended that Nick register with the Disability Support Services Office. Nick was unaware that he was potentially eligible for services and he was unaware of the process for receiving accommodations. The staff explained the accommodation process at the college level and gave Nick the contact information for the DSS office. After a meeting with the DSS coordinator, Nick was authorized to tape class lectures, take tests in an isolated area, receive books in an alternate format and received extended time for taking tests. Although Nick was eligible for services, he felt intimidated by his professors and felt that they would judge him if he disclosed his disability. Nick and the staff discussed his feelings about having to disclose his disability to his professors. They also brainstormed ways to approach faculty. After they brainstormed, they role played these interactions. This helped to reduce Nick’s anxiety over disclosure and gave him confidence to approach his professors. Finally, the staff introduced Nick to another student with a disability in order for Nick to have a support system. Since Nick was overwhelmed with his schedule, staff informed him of the University’s policies on add/drop and withdrawal. Nick was not BRAIN INJURY PROFESSIONAL

27


aware of these policies. As he was well beyond the add/drop period, staff and Nick discussed the option of withdrawing from one course in which he was failing. Nick decided to withdraw from the course and concentrate on his remaining classes. Staff also reminded Nick of the upcoming priority registration date. They also discussed taking a reduced load and creating a balanced schedule that emphasized his areas of interests as well as his strengths. To improve Nick’s time management skills, Nick worked on developing a semester to do list, creating weekly work plans for academic assignments, and using a paper planner. Additionally, assignments were broken into manageable tasks and prioritized. Although the paper plan was somewhat effective, Nick needed prompting to look at the planner and he often overlooked items on his to do list as well. The use of a personal digital assistant (PDA) to use for time management was explored because the PDA has an alarm notification of upcoming events, which would help prompt Nick. Generalizing the use of this type of technology to the student’s future career was discussed. Nick soon discovered that planning and structuring his time improved his attention and concentration, as well as increased his motivation to succeed. Nick explored text-to-speech software for reading and writing as a way to compensate for his vision and memory issues. He found it useful to both hear and see the words on the screen. It was also helpful as a proofreading tool to listen to the papers he had written. With the utilization of accommodations, improved time management skills, and the use of technology, Nick was able to raise his grade point average. To supplement his academic work and maintain a challenging schedule, Nick arranged a weekly volunteer position in a neurosurgery laboratory on campus. Through the assistance of the supported education program Nick later obtained a weeklong externship in the Pathology Department of a local hospital, entry-level summer employment, and a part-time lab technician position at a local blood service agency. Nick currently works in the whole blood components lab where he expresses platelets and separates plasma from red blood cells and puts his laboratory skills to practice. By combining work experience with academic study, Nick was able to complete his first two years of study as a pre-health science major and was recently accepted into the clinical laboratory science medical program. Nick continues to utilize his accommodations, use his study and compensatory strategies, and maintains a strict schedule. He is currently pursuing his four-year degree.

CONCLUSION

Individuals with traumatic brain injury who enter postsecondary education face a number of issues and challenges that complicate the successful completion of their degree programs. Universities and colleges concerned with the retention rates of all students are beginning to explore strategies that enable students with disabilities to fully benefit from the educational experiences offered in higher education. Students with disabilities are one of several groups of diverse learners in college today. For these students, service options beyond the formal accommodation process established on campuses are needed. As universities and colleges explore the expansion of these service options, programs such as the one established at VCU need further study to document their effectiveness in meeting the unique learning needs of college students with traumatic brain injuries.

ABOUT THE AUTHORS

Shannon McManus is a faculty member with the Virginia Commonwealth University-Rehabilitation Research and Training Center. While at theVCU-RRTC, she has been involved in many activities that promote selfdetermination, academic success in postsecondary education, and effective transition services for students with disabilities. Her research areas of interest include students with disabilities transitioning from high school to postsecondary education, identifying educational interventions that support students with learning disabilities in postsecondary education, and exploring assistive technology options for students with disabilities. Lori W. Briel, M.Ed. is Research Associate with the Rehabilitation Research and Training Center on Workplace Supports at Virginia Commonwealth 28 BRAIN INJURY PROFESSIONAL

University. In addition to her master’s degree in education, she has extensive experience providing career development services, resource coordination, and employment supports for individuals with significant disabilities. Ms. Briel currently coordinates a comprehensive career-planning program for postsecondary students with disabilities. Her disability-related research interests include the transition from high school to college, career development for postsecondary students, and employer education. Elizabeth Evans Getzel, M.A., is Director of Postsecondary Education Initiatives with the Rehabilitation Research and Training Center on Workplace Supports at Virginia Commonwealth University. She has extensive experience in conducting research, evaluation, and training in the areas of transition planning for secondary students with disabilities, postsecondary education for students with disabilities, and career planning/employment for individuals with disabilities.

REFERENCES

Allen, S. & Carlson, G. (2003). To conceal or disclose a disabling condition? A dilemma of e m ployment transition. Journal of Vocational Rehabilitation, 19(1), 19-30. Berry, H. (2000, spring). Improving outcomes for students with disabilities: Policy and research issues. Impact, 13(1), 6. Blackorby, J., & Wagner, M. (1996). Longitudinal postschool outcomes of youth with disabilities: Findings from the National Longitudinal Transition Study. Exceptional Children, 62, 399-413. Briel, L.W., & Getzel, E.E. (2001). Internships in higher education: Promoting success for students with disabilities. Disability Studies Quarterly, 21(1) 38-48. Brinckerhoff L.C., Shaw, S.F., & McGuire, J.M. (1993). Promoting postsecondary education for students with learning disabilities: A handbook for practitioners. Austin, TX: PRO-ED. Burgstahler, S. (2003). The role of technology in preparing youth with disabilities for postsecondary education and employment. Journal of Special Education Technology, 18(4), 7-21. Clark, E., Russman, S., & Orme, S. (1999). Traumatic brain injury: Effects on school functioning and intervention strategies. School Psychology Review, 28, 242-250. Cooper, L. (1993). Serving adults with psychiatric disabilities on campus: A mobile support approach. Psychosocial Rehabilitation Journal, 17(1), 25-38. deFur, S.H., & Taymans, J. (1995). Competencies needed for transitions specialists in vocational rehabilitation, vocational education, and special education. Exceptional Children, 62, 38-51. Egnew, R.C. (1993). Supported education and employment: An integrated approach. Psychosocial Rehabilitation Journal, 17 (1), 121 -127. Gajar, A. (1992). University-based models for students with learning disabilities: The Pennsylvania State University in mode. In F.R. Rusch, L. DeStefano, J. Chadsey-Rusch, A. Phelps, & E. Szymanski (Eds.), Transition from school to adult life: Models, linkages, and policy (pp.51-70). Sycamore, IL: Sycamore Publishing. Gajar, A. (1998). Postsecondary education. In F.R. Rusch & J.G. Chadsey (Eds.), Beyond high school: Transition from school to work (pp. 383-405). Belmont, CA: Wadsworth Publishing. Getzel, E.E., Briel, L.W., & Kregel, J. (2000). Comprehensive career planning: The VCU career connections program. Journal of Work, 14, 41-49. Getzel, E.E., Briel, L.W., & McManus, S. (2003). Strategies for implementing professional development activities on college campuses: findings from the OPE funded project sites (1999-2002). Journal of Postsecondary Education and Disability, 17(1), 59-78. Getzel, E.E., Stodden, R.A., & Briel, L.W. (2001). Pursuing postsecondary education opportunities for individuals with disabilities. In P. Wehman (Ed.), Life beyond the classroom: Transition strategies for young people with disabilities. Baltimore: Paul H. Brookes Publishing Co. Gordon, M., & Keiser, S. (1998). Underpinnings. In M. Gordon & S. Keiser (Eds.), Accommodations in higher education under the Americans with Disabilities Act (pp.3-19). De Witt, NY: GSI Publications. Greenbaum, B., Graham, S., & Scales, W. (1995). Adults with learning disabilities: Educational and social experiences during college. Exceptional Children, 61(5), 460-471. Horn, L., & Berktold, J. (1999). Students with disabilities in postsecondary education: A profile of preparation, participation, and outcomes. Washington, DC: U.S. Department of Education, National Center for Education Statistics. Keyser-Marcus, L, Briel, L., Sherron-Targett, P., Yasuda, S., Johnson, S., & Wehman, P. (2002). Enhancing the schooling of students with traumatic brain injury. Teaching Exceptional Children 34(4), 62-67. Keysor, D.V. & Pierce, M.A. (2000). Does intern/co-op experience translate into career progress and satisfaction? Journal of Career Planning & Employment, 60(2), 25-31. Langton, A.J., & Ramseur, H. (2001). Enhancing employment outcomes through job accommodation and assistive technology resources and services. Journal of Vocational Rehabilitation, 16(1), 27-37. Mowbray, C.T., Moxley, D.P., & Brown, K.S. (1993). A framework for initiating Supported Education Programs. Psychosocial Rehabilitation Journal, 17, 129-149. Mellard, D.F. (1994). Services for students with learning disabilities in community colleges. In P. Gerber & H. Reiff (Eds.), Learning disabilities in adulthood: Persisting problems and evolving issue (pp.130-140). Boston, MA: Andover Medical Publishers. Minskoff, E. (1994). Postsecondary education and vocational training: Keys for adults with learning disabilities. In P. Gerber & H. Reiff (Eds.), Learning disabilities in adulthood: Persisting problems and evolving issues (pp.111-120). Boston, MA: Andover Medical Publishers. Mooney, D. (1996, March). You can go to college. Paper presented at the meeting of the International Conference of the Learning Disabilities Association, Dallas, TX. National Center for Education Statistics. (2003). The condition of education. November 1, 2005, from http://nces.ed.gov/pubs2003/2003067.pdf


3-5 – Miam Miller

National Center for the Study of Postsecondary Education Supports. (2000b, June). National focus group project: Perspectives of students with disabilities in postsecondary education: A technical report. Honolulu, HI: University of Hawaii at Manoa, National Center for the Study of Postsecondary Educational Supports (NCSPES). National Organization on Disability. (2002, May 15). What is the technology gap? Retrieved March 1, 2004, from http://www.nod. org/index.cfm?fuseaction=page.viewPage&pageID=1430&nodeI D=1&FeatureID=771&redirected=1&CFID=2216763&CFTO KEN=69661733 Ruoff, J. (2001). The student with a brain injury: Achieving goals for higher education. Retrieved October 26, 2005, from The George Washington University, HEATH Resource Center Web site: http://www.heath.gwu.edu/PDFs/Brain%20Injury.pdf Scott, S.S. (1996). Understanding colleges: An overview of college support services and programs available from transition planning through graduation. Journal of Vocational Rehabilitation, 6, 217230. Senator, S. (2000). Technology and employment: In today’s workplace, assistive devices can enable people with disabilities to do the job. Exceptional Parent, 30(11), 40-45. Unger, K.V. (1998). Handbook on Supported Education: Providing services for students with psychiatric disabilities. Baltimore: Paul H. Brookes Publishing Co., Inc. Wagner, M., & Blackorby, J. (1996). Transition from high school to work or college: How special education students fare. The Future of Children: Special Education for Students with Disabilities, 6(1), 103-120. Wagner, M., Cameto, R., & Newman, L. (2003). Youth with disabilities: A changing population: A report of findings from the National Longitudinal Transition Study (NLTS) and the National Longitudinal Transition Study-2 (NLTS2). Menlo Park, CA: SRI International. West, M.D., Kregel, J., Getzel, E.E., Zhu, M., Ipsen, S.M., & Martin, E.D. (1993). Beyond Section 504: Satisfaction and empowerment of students with disabilities in higher education. Exceptional Children, 59(5), 456-467. Wilson, K., Getzel, E., & Brown, T. (2000). Enhancing the postsecondary campus climate for students with disabilities. Journal of Vocational Rehabilitation, 14(1), 37-50.

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Self-Employment Development for People with Traumatic Brain Injuries: Tailoring Approaches to Fit the Unique Needs of People with TBI

BY TAMMARA GEARY, ROGER SHELLEY, CARY GRIFFIN, DAVID HAMMIS The consequences of TBI are multiple and diffuse. This is why effective strategies for return to work following brain injury are often ineffective, expensive, and largely underutilized (Godfrey, Bishara, Partridge, et al., 1993; Greenspan, Wrigley, Kresnow, et al., 1996; Wehman, West, Johnson, et al., 1999; Wehman, Kregel, West, et al., 1994). The result of blunt trauma or coup contre coup of the brain can affect a person cognitively, physically, and emotionally (Brain Injury Association of America, 2001; Abreu, Seale, Podlesak, et al., 1996; Bell and Sandel, 1998; Ruff, Marshall, Crouch, et al, 1993). Cognitive consequences can include: • Short-term memory loss, slowed ability to process information, trouble with concentration, difficulty with comprehension of information, communication, or written language, spatial disorientation, organizational problems and impaired judgment, difficulty with multi-tasking or complex operations. • Physical Consequences can include: seizures of all types and severity, muscle spasticity, double vision, low vision, blindness, loss of taste or smell senses, speech impairments such as slow or slurred speech, headaches and migraines, fatigue, increased need for sleep, balance problems, chronic pain. • Emotional Consequences can include: lack of activity initiation or difficulty finishing tasks without reminders, increased anxiety, depression and mood swings, denial of deficits, impulsive behavior, aggression, egocentric behaviors. Approximately 75% of individuals with TBI who return to work lose their jobs within 90 days if work supports are not in place, and it is a fact that the literature on return to work of individuals with TBI shows a paucity of efficacious models, with supported employment being the predominantly effective approach (West, 1996; West, 1995; Oliver, Ponsford, and Curran, 1996; Hirsh, Duckworth, Hendricks, et al., 1996; Johnson, Greenwood, and Schriner, 1988; Prigatano, Klonoff, O’Brien, et al., 1994; Sander, Kruetzer, Rosenthal, et al., 1996; 30 BRAIN INJURY PROFESSIONAL

Van der Naalt, Van Zomeren, Sluiter, et al., 1999; Wall, Niemczura, and Rosenthal, 1998). Numerous studies and projects have aimed at return to work following a TBI, and numerous models have been explored. These include such approaches as “critical pathway care” in which care leading up to employment is maximized (Abreu, Seale, Podlesak, et al., 1995). Another approach reported on by Curl, Fraser, Cook, and Clemmons (1996) utilized paid co-worker support to increase job tenure. Still other approaches have combined pre-employment readiness training, milieu therapy, neuropyschology, and vocational coaching to increase job resiliency. The common denominator is the provision of supports and the realization by researchers and practitioners alike that competitive placement for individuals with TBI, and other significant disabilities, does not work (Wall, et al., 1998; Wehman, 2001).

Why Self-Employment? By getting to know a person in his or her home, in the context of the home community, and in his or her day to day life, opportunities for self-employment are revealed. The individual’s true interests, capacities, strengths, network, support and accommodation needs, etc. are uncovered, as are the economic opportunities that exist within his or her community. Selfemployment blends these factors to identify the ideal conditions of employment for the individual yielding a contributing business. In many instances, self-employment development offers the ultimate in customization, allowing for the creation of a more finely matched work opportunity designed by the person and their team. Resources and accommodations may be recruited and employed at any time during the formation of the business. Products and services may be modified to more closely fit the interests and preferences of the person during initial business building and beyond. Hours of operation may be varied as necessary, and income can be regulated. Often, self-employment offers people with disabilities a higher quality of life and a sense of career advancement through increased earning potential and community integration on the individual’s terms. Integration may take the

form of relationships with suppliers, customers, mentors, and other business owners. Self-esteem is increased as they realize that the aspirations which are important for them can be well accomplished, and they are an integral part of the community. Business ownership projects a competence and status that is frequently beyond that of a typical wage job. Of major importance is the fact that self-employment offers far more flexibility in building personal wealth than typical wage employment. Self-employment, despite years of folkloric criticism as high-risk, actually turns out to be as stable as or more stable than wage employment. The project team’s experience at creating small businesses for people with disabilities, both from the Montana/Wyoming Careers Through Partnerships Project (1998-2003, U.S. Department of Labor, Employment and Training Administration project), and Montana Choice (2003-2005 U.S. Department of Labor, Office of Disability Employment Policy Customized Employment Project), in which over 300 businesses were created realized a 90% success rate. Average earnings for the participants in these projects have been well above minimum ($10 per hour), and average hours worked per week has been somewhere around 30. Although still relatively small in numbers, during the past decade, there has been a growing number of agencies establishing and using various competitive and supported employment methodologies targeted at people with TBI, and likewise a number of organizations serving people with various disabilities beginning to build their capacity to serve people in self-employment. The key to the success of these programs has been the establishment and maintenance of a cadre of well-trained direct service personnel, readily available technical assistance, and a concentration on consumer self-determination and leveraging of available resources. A serious need for employment support and the option of self-employment exists for people with TBI. This project focuses on bringing existing best practices and technical assistance to bear in supporting two communities in tailoring self-employment development strategies to meet the unique needs of people with TBI.


Self-Employment Development for People with Traumatic Brain Injury The SEDTBI (Self-Employment Development for Individuals with Traumatic Brain Injury) is a NIDRR-funded project awarded to the Brain Injury Association of America (BIA) in partnership with the Rural Institute at the University of Montana and Griffin-Hammis Associates (GHA). Its purpose is: To create self-employment for individuals with traumatic brain injuries through inventive, replicable, and capacity building approaches coupled with the provision of high quality and cost effective technical consultation and program redesign in two development communities. The project tests how best practice information and procedures may be applied to this specific group of people, how accommodations may differ from other groups entering self-employment, and how self-employment impacts the lives of the participants, their support systems, and their communities. Currently, the two development communities are Salt Lake City, Utah and Louisville, Kentucky. Locally, participants are supported by staff at the Brain Injury Association of Utah (BIAUT) and the Brain Injury Association of Kentucky (BIAK) in partnership with a local employment services provider, Community Employment, Inc. Capacity building technical assistance is provided to BIAUT by the Rural Institute and to BIAK by GHA, with all parties contributing to the data being collected throughout the project. This project builds on the obvious success of supported employment for individuals with TBI, but takes it one step farther toward self-determination and self-management using a selfemployment approach that borrows supported employment techniques to stabilize and bolster the individuals and the small business using a variety of post employment supports. Supports may be provided by rehabilitation organizations, but also include a host of supports utilized by most small businesses, including mentors through the Service Corps of Retired Executives (SCORE), Small Business Development Center (SBDC) consultants and classes, Chamber of Commerce members, contracted accountants, bookkeepers, sales representatives, marketing specialists, product developers, fabricators, fellow business people, and others. The project team has demonstrated the effectiveness of “supported” self employment in numerous communities across the country and on Indian Reservations, and have worked with many individuals deemed “too disabled to work” or “too behaviorally challenged” to get a job. These outcomes are well documented in Rural Institute publications (Griffin, Flaherty, Kriskovich, et al., 1999; Griffin, Katz, Shelley, et al., 2001; Newman, 2001; Newman, 2000; Griffin and Hammis, 2003). Self-employment is gaining respect as a service option nationwide. Annually, Vocational Rehabilitation closes about 5,000 selfemployment cases, or roughly 2% of their total closures. Nationally, most participants in selfemployment have serious physical disabilities.

People with TBI continue to be underserved by state vocational rehabilitation agencies and community rehabilitation providers, the need evident in the literature and in the consumer outreach by the Brain Injury Association of America. This project seeks to expand the successes of the past few years of the Rural Institute and Griffin-Hammis Associates in serving underserved populations using self-employment approaches (Griffin and Hammis, 2003; Griffin, 1999; Shelley, Griffin, Hayes, et al., 1999) and to study and develop these approaches to serve people with TBI. This development project uses self-employment as both a logical extension of supported employment techniques that have proved by far the most effective employment strategy for individuals with brain injuries, and as a commonsense job accommodation that considers each individual’s unique disability status, personality, dreams, talents, and desires when developing a business model (Griffin and Hammis, 1996; Griffin and Hammis, 2001; Newman, 2001; Griffin and Hammis, 2003; Wehman, et al, 2001).

Development Model and Research Questions SEDTBI is based on a practical development model which is detailed in Cary Griffin and David Hammis’ book, Making Self-Employment Work for People with Disabilities, (2003). The research questions follow a heuristic design because the research literature of return to work and TBI is barren of even slight mention of selfemployment or microenterprise. Due to this, the model must first be refined and tailored to the unique nature of TBI and its many complications and challenges. There are, however, basic data analysis points that are central to the development project, including the following research questions: 1) What is the cost of selfemployment compared to existing national cost data for competitive employment?; 2) What is the cost of self-employment compared to existing national cost data for supported employment?; 3) What are the individual usable vocational financial resources pre-project compared to individual resources post project inception?; (4) What is the usage of assistive/universal technology in employment pre-project compared to usage post project inception?; and (5) Is there an increase in consumer-reported quality of life pre and post project? In addition, the project is documenting its observations about how self-employment development models and strategies are refined and tailored to meet the needs of individuals with TBI, as well as what types of supports are needed. Beyond the observations, participants/business owner interviews are conducted to record the individual’s perspective. While it is too early in this project to answer the five questions outlined above, some of these initial observations and a few brief business owner profiles are presented here.

Interviews and Profiles As the project proceeds, interviews are conduct-

ed with potential business owners (PBO), brain injury association personnel, vocational rehabilitation personnel, and unfunded resources, and personal support people (family, friends and other community members). All concur that the option of self-employment holds great promise for people with TBI. The opportunity to acquire financial resources and supply necessary personal accommodations via the business plan, staffing, and structure provides a real motivation for continued advancement toward the work goal. Through the interviews and tailoring of the self-employment process, personal values and past experience are evident in the person’s business idea, and in some cases, the influence of ready and tested markets plays an important role in the person’s choice of self-employment and the business idea. For example, in one case, the potential business owner had access to potential customers due to previous work experience, while another was encouraged by potential customers/markets to begin business operations. Interviews revealed that accommodation and ongoing support for both the individual and the business development effort, as well as technical support on particular aspects of the business operations are viewed as necessary both by the potential business owners and the various people supporting them. One such accommodation is providing services and supports to the person in his or her home, which may run counter to the manner in which many providers administer services. For the person who may not be able to transport themselves to the provider’s office, or feels more comfortable working from their home, this accommodation appears to be not only reasonable, but necessary. In some cases, community or personal supports may be asked to perform these functions, either by the person themselves or by the supporting personnel. Technical assistance with any number of business issues, website development, securing and preparing of business location, marketing of products and services, or manufacturing and business logistics must be provided to the extent that the person deems necessary. This type of technical assistance both serves to assist the person in focusing on the identified goals and priorities of the business, and to maintain the passion and energy associated with any self-employment initiative.

Self-Employment Profiles Alan – Landscape Maintenance, Layton, Utah Reason for employment choice: Alan has always liked working outdoors and landscaping. Background: Alan’s father and two brothers are in the nursery business, so he “grew up in the business”. Alan was in the nursery business prior to injury. He was previously employed by the City of Layton in the maintenance department. Business services: Pruning, landscape maintenance, sprinkler systems, mowing, BRAIN INJURY PROFESSIONAL

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weeding, planting all types of shrubs and trees. Customer base: Business people, homeowners Marketing plan: Target people that he has known through former work experiences and as a member of the community. He has not paid for any form of advertising. Supports: Family members and customers Margaret – Informational Web-based Publishing, Salt Lake City, Utah Reason for employment choice: Margaret’s choice is based upon her values and her concern for other people with disabilities and their access to information to improve their quality of life. Background: Margaret participated in the Community Computer Education Program (CCEP) which is a return to work program supplying people with computer skills and a free computer upon successful graduation. She also used the career development services offered by the BIAUT. Business services: Publishing of web-based newsletter to supply information to people with disabilities and to showcase provider and community services. This newsletter is sponsored financially by the organizations being showcased in the various editions. Margaret will develop a listserve in order to facilitate exchange of information between herself and community members, as well as the members themselves. Customer base: Service providers, community businesses and organizations, people with disabilities Marketing plan: Develop website prototype and present it to the customer base with the help of BIAUT and develop sponsors. Supports: Vocational rehabilitation, BIAUT, Utah Arts Council (grant writing skills class), and a personal friend for website development and graphic arts. Paris – Therapeutic Massage and Sports Therapy, Provo, Utah Reason for employment choice: Paris is driven to work with people with spiritual and physical needs and to supply information on healing methods. Background: Paris had a head injury at 14. He is a licensed massage therapist who has learned a variety of techniques. He prefers to practice oriental healing techniques, and has worked with people with severe head injuries. He had a business based in a hair salon (business within a business), and a home based massage therapy business. Business services: Treating people with head injury and a variety of physical ailments. Treating local athletes for sports related injuries and training them to avoid injury. Customer base: Local college and high school athletes, people with head injury, and community members. Business services: Paris is endeavoring to specialize in sports-related therapy. His first contact to provide services will be with the 32 BRAIN INJURY PROFESSIONAL

Brigham Young University (BYU) football program in Provo. He will then begin contacts with the local high school sports programs. Supports: Vocational rehabilitation, BIAUT, and family members.

Support Team Member Profiles Andrew – Vocational Rehabilitation Counselor, Salt Lake City, Utah Rehabilitation philosophy concerning self-employment and people with TBI: Self-employment is a practical approach for people with traumatic brain injury in that it allows the person to supply accommodations and supports as necessary. It may also allow people the time that it takes to become successful in competitive self-employment where typical employment may be more restrictive. Rehabilitation approach: To allow people entering the self-employment process to be supported by local providers using limited, but flexible, VR funding for technical assistance in exploring and organizing their business. He allows the person to develop many of their own supports and the direction of the business development process. He will develop the plan of employment (IPE) as the person identifies business goals and resources which are necessary for employment success. He is careful not to erect systemic barriers that may diminish the person’s energy for their self-employment goal. Concerns for successful rehabilitation: The ability for people with traumatic brain injury to focus and prioritize. Recommendation to overcome concern: His continued meeting with the person and other support personnel to supply ongoing technical assistance and help with problem solving. Larry – Brain Injury Association of Utah, Salt Lake City, Utah Rehabilitation philosophy concerning self-employment and people with TBI: Self-employment promotes a sense of self-determination for the person, and their ability to fully enjoy the freedoms of the employment process. It provides the opportunity for the person to engage in activities they truly perceive as important. Self-employment provides accommodations which may not be available through more typical employment where employers retain a stereotypic view of people with brain injury. Rehabilitation approach: The self-employment model and its emphasis upon self-determination add purpose and direction to other aspects of the person’s life. The attainable work goal contributes to a better quality of life for the person, overall. Concerns for successful rehabilitation: The ability to prioritize tasks that need to be done for a smoother transition. With traumatic brain injury, fatigue, mobility issues,

lessened ability to concentrate, and changes in behavior may become on-going barriers which require significant accommodations. Recommendation to overcome concern: The facilitation of supports and resources for the person on an extended basis. These would include family members, community members, existing typical services for people endeavoring to build successful businesses, and other public entities serving people with brain injury.

General Observations: Tailoring Self-Employment Approaches While not true of every person participating in the project, project team has noted some themes and commonalities specific to the people with TBI who have participated in the project. These themes are presented here because they appear to be somewhat unique in the team’s experience in developing self-employment and small business with people labeled with a variety of other disabilities. It would be inappropriate to mistake these themes as prerequisites or predictors of success. Rather their impact guides and alters the process of self-employment development, changing the focus somewhat from a heavy emphasis on individual discovery to planning and developing the supports and strategies needed for the individual and the business to be successful. 1. Business Ideas The people who have participated in this project have, by and large, come into the project with solid business ideas. In many cases, people have thought through the idea and have a vision of what the business should look like, who their customers might be, and what kinds of supports they might need. 2. Preliminary Work on the Idea Many people participating in this project came in to the initial meetings with not only a business idea, but also having done significant work to move in that direction. For example, one man came in wanting to start a foundation to provide financial assistance to individuals and families in the immediate aftermath of a brain injury, and work as a trainer and presenter on issues related to recovery following injury. He and his wife had already accessed a consultant to help them establish a foundation and filed necessary applications with the Internal Revenue Service (IRS). He had also signed on his first few donors, who were simply waiting for the required approvals from the IRS. In addition, he had booked several speaking engagements, and had been well-received thus far. Several individuals had already started taking classes to build their expertise in their chosen business area. One already had his massage therapy certification, another had necessary Microsoft and other certifications to aid her in starting a computer help-desk type business. Still others have started dabbling in their chosen area, taking on a few clients and selling their product or service. Some had joined various business owner groups for the networking


and support available via these venues. Some had already been involved with their local Small Business Development Centers (SBDC) or similar organizations. Nearly every person who came into this project had taken some significant steps to start their business. 3. Garnered Support Most people who participated in this project came with some built-in or previously developed supports. Some had significant family support, emotionally, financially, or structurally, in one combination or another. Others had very good friends as resources, in a few cases, friends offering significant financial support for start-up. As mentioned before, those that had accessed the SBDC or business owners groups had made supportive contacts. These supports are critical to moving the process forward. While not all people came in with established supports, those that did presented with very solid ones. 4. Links to the Past In several cases, people’s business ideas were related to their pre-injury interests of experiences. For example, one man wanted to pick work in the landscaping business that he had “grown up in”, while another wants to rebuild his pre-injury photography work as a business. While some are interested in reconnecting with their pre-injury interests or work, others were looking to engage an entrepreneurial spirit, having run a business prior to injury. Although there is not necessarily the desire to return to the same type of business, the desire to be selfemployed remains. 5. Keep People Engaged One of the most striking observations of the project team has been the difficulty keeping people engaged with the process. Nearly 30% of project participants dropped out of the project. Reasons were varied but were primarily centered around personal and family issues, or a decision that they felt uncomfortable with moving forward for one reason or another, some deciding that they just weren’t sure they wanted to be self-employed as they began to understand it better. In general, people have required consistent support to keep moving forward with the process of developing a business. 6. Keep It Simple Most people in the project have expressed a desire to keep it simple. They state a desire to build something that allows them to do something they enjoy, build the flexibility and supports they need to be successful at work, and enable them to make some money. The more complicated the process, the plan, and the business structure and operation, the harder it is to manage and move forward.

General Observations: Frequently Requested Assistance and Support Though many people did join the project with solid ideas and, in many cases, significant preliminary work, there were several areas people needed support and assistance. In general, the assistance focused on determining if and how the idea could be turned into a sustainable

business, and what kinds of supports would be needed for the individual to be successful. 1. Fleshing Out the Business Idea People needed help taking the business idea from concept to reality. This includes exploring the idea, looking at the product, identifying target customers/market, testing for feasibility of business, marketing, contingency planning, positioning, basic business structure, etc. Basically people need assistance with developing the idea into a sustainable business. 2. Financing and Financial Planning Most people identify financial planning for the business as an area of need. This process involves determining how much income a person needs or desires to generate from the business as a starting point. Financial planning also includes determining what equipment and/or other start-up costs are, product pricing (considering price to produce vs. sales price), necessary production for produce desired levels of revenue, budgeting and revenue/cost projections, planning for managing the business finances, etc., and identifying sources of funding for start-up. In most cases, the business development team seeks to use multiple sources of funding to cover the various expenses of startup. Funds may include Vocational Rehabilitation funds, Social Security Work Incentives (SSWI) such as Plan to Achieve Self-Support (PASS), personal or family or friend investment, and other funds available and identified locally. 3. Business Research, Planning, and Development: The Business Plan The Business Plan weaves together all the elements necessary to build the business: feasibility, product, customers, marketing, financing and budgeting, distribution, operational and management issues such as accounting, billing, staffing if needed, etc. In addition, supports necessary for the individual and the venture to be successful are written and funded as part of the business plan. All of the information to be incorporated into the plan is studied and developed by the individual and his or her business development team (BDT). The business plan provides the structure needed for the BDT to move forward with the business, and the information necessary for funders to commit to the self-employment venture. 4. Ongoing Support and Development of Support and Accommodation Strategies The provider organization is a necessary component in the business development process. Throughout this project, provider organization staff facilitate the BDTs and provide significant supports to the individual. Mentoring, facilitation, guidance, support, and regular contact and encouragement of steady progress are essential factors in moving from a plan to an operational business. In many cases the provider and/or members of the BDT are involved in assisting people to purchase and set-up equipment and helping the individual learn to use it. Support is required to help people learn the operational details such

as keeping records, managing time, appointments, deadlines, etc. and accommodations and compensatory strategies are put into play as needed. Though it is still fairly early in the project, it appears likely that coaching and support strategies will be important on an ongoing basis for most participants. 5. Benefits Planning Benefits planning is of critical importance in the self-employment development process. Many people with TBI have ongoing medical expenses, so maintenance of Medicaid and/ or other health benefits are a major concern. People also express concerns about their cash benefits. For many people, this has been their only or predominant source of income since the life-altering event that resulted in the TBI. Thorough benefits analysis, paired with planning and education help the individual to understand the impact of self-employment net earnings on benefits, and can help him or her make informed decisions about benefit. Further, benefits analysis and planning may reveal resources that may be brought to bear in support of the business. The identified needs and supports for the project participants demonstrate to some extent the unique challenges and opportunities available to people with disabilities via selfemployment. While the SBDC, SCORE, and other organizations are valuable resources and can be extremely helping is setting up the business, their experience with people with TBI or other disabilities is limited. This may impact perception of the individual’s likelihood of success or failure, and may hinder the understanding of what and how to build in the essential supports needed by the individual. Further, benefits planning are not typically part of the business planning process for people who are not receiving Social Security and/or other benefits. There are also sources of funding available to people with disabilities to help with business start-up and development that are not available to people of the general population such as Vocational Rehabilitation and Social Security Work Incentives. There is an abundance of opportunity available to people with TBI via self-employment. With thoughtful and strategic implementation of self-employment development approaches, people with TBI are successfully building, opening, and operating self-employment and microenterprise ventures, and are leading lives that allow them to contribute valuably to their communities. This project is funded by the National Institute of Disability Research and Rehabilitation (NIDRR) grant # H133G020215. The Project was awarded to the Brain Injury Association of America in collaboration with the Rural Institute on Disability at the University of Montana and GriffinHammis Associates, Inc. In addition to the project site at the Brain Injury Association of Kentucky in partnership with Community Employment, Inc., there is also a site in Salt Lake City, Utah. BRAIN INJURY PROFESSIONAL

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ABOUT THE AUTHORS

Tammara Geary is the SEDTBI Project Director and Lead Associate with Griffin-Hammis Associates. She provides training and technical assistance on various topics related to employment and self-employment of people with disabilities. Among her other training and technical assistance work, recent projects include working the One-Stops in Georgia to improve access and services to people with disabilities; heading up a NIDRR funded self-employment initiative for people with brain injuries for the Brain Injury Association of America; working intensively with a community and employment support organization in Maryland to expand and improve its services to include Discovery, Self-Employment, and highly individualized and state-of-the-art development and support strategies. Roger Shelley is an Organizational Consultant with the Rural Institute at the University of Montana, and operator of Roberts Consulting, a training and consulting company. For the past ten years, Roger has provided training and technical assistance services in supported employment and self-employment for people with disabilities, parents, school personnel, One-Stop staff, state vocational rehabilitation personnel, and community rehabilitation programs. Currently, Roger is providing services on the US DOL ODEP funded “Montana Choice” project, and the US DOLETA “Montana/Wyoming Careers through Partnerships” project through Montana Job Training Partnership, and the “RESEED” project funded through RSA. Cary Griffin is Senior Partner at Griffin-Hammis Associates. Cary maintains a strong relationship with the Rural Institute at the University of Montana, where he served as Director of Adult Community Services and Supports. He is the former Executive Director of the Region VIII CRP-RCEP at the Center for Technical Assistance and Training (CTAT), which he founded at the University of Northern Colorado in 1989. Cary provides training to administrative and direct service level professionals in the rehabilitation field; consultation to businesses and rehabilitation agencies regarding the employment of individuals with significant disabilities; field-initiated research and demonstration; family and consumer case consultation; resource development; organizational development. David Hammis is Senior Partner at GriffinHammis Associates, and also maintains an ongoing relationship with the Rural Institute at the University of Montana, where he served as Project Director for multiple self-employment, employment and Social Security outreach training and technical assistance projects including the Rural Institute’s Rural Entrepreneurship and Self-Employment Expansion Design Project.

REFERENCES

Abreu B. Seale G. Podlesak J, et al., Development of Critical Paths for Post Acute Brain Injury Rehabilitation: Lessons Learned. American Journal of Occupational Therapy. 50(6):417427, 1996. Bell K. & Sandel M., Brain Injury Rehabilitation: Postacute Rehabilitation and Community Integration. Archives of Physical Medicine and Rehabilitation. 79(3): S21-S25, 1998. Brain Injury Association of America: The Costs and Causes of Traumatic Brain Injury. Alexandria, VA: BIA, 2001. Centers for Disease Control: Traumatic Brain Injury in the United States: A Report to Congress. Atlanta: CDC, 1999. 34 BRAIN INJURY PROFESSIONAL

Curl R. Fraser R. Cook R, et al., TBI Vocational Rehabilitation: Preliminary Findings for the Co-Worker as Trainer Project. Journal of Head Trauma Rehabilitation. 11(1): 75-85, 1996. Godfrey H. Bishara S. Partridge F, et al., Neuropsychological Impairment and Return to Work Following Severe Closed Head Injury: Implications for Clinical Management. New Zealand Medical Journal. 106(960): 301-303, 1993. Greenspan A. Wrigley J. Kresnow M, et al., Factors Influencing Failure to Return to Work Due to Traumatic Brain Injury. Brain Injury. 10(3), 207-218, 1996. Griffin C: Rural Routes: Promising Supported Employment Practices in America’s Frontier. In: The Impact of Supported Employment. Richmond: Virginia Commonwealth University, 1999. Griffin C. Flaherty M. Kriskovich B, et al.: Bringing Home the Bacon: Inventive Self-Employment & Supported Employment in Rural America. Missoula: Rural Institute, University of Montana, 1999. Griffin C. & Hammis D: StreetWise Guide to Person-Centered Career Planning. Denver: CTAT, 1996. Griffin C. & Hammis D: What Comes After What Comes Next: Self-Employment as the Logical Descendant of Supported Employment. In: Supported Employment in Business: Expanding the Capacity of Workers with Disabilities. St. Augustine: TRN Press, 2001. Griffin C. & Hammis D: Making Self-Employment Work for People with Disabilities. Baltimore: Brookes Publishers, 2003. Griffin C. Katz M. Shelley R, et al.: People Who Own Themselves: Self Employment and Self Determination in the New Millennium. Missoula, MT: Rural Institute, University of Montana, 2001. Hirsh A. Duckworth K. Hendricks D. et al., Accommodating Workers with Traumatic Brain Injury: Issues relayed to TBI and ADA. Journal of Vocational Rehabilitation. 7(3): 217-226, 1996. Johnson V. Greenwood R. & Schriner K, Work Performance and Work Personality: Employer concerns about Workers with Disabilities. Rehab Counseling Bulletin. 32(1), 50-57, 1988. Lewin, I. (1992). The Cost of Disorders of the Brain. Washington, DC: National Foundation for the Brain, 1992. McLean D. Kaitz E. Keenan C. et al, Medical and Surgical Complications of Pediatric Brain Injury. Journal of Head Trauma Rehabilitation. 10(5), 1-12, 1995. Newman, L. MT/WY Careers Through Partnerships. The Rural Exchange. 14(1), 8-10, 2001. Oliver J. Ponsford J. & Curran C., Outcome following TBI: A Comparison between two and five Years after Injury. Brain Injury. 10(11), 841-848, 1996. Prigatano G. Klonoff P. O’Brien K. et al., Productivity After Neuropsychologically Oriented Milieu Rehabilitation. Journal of Head Trauma Rehabilitation. 9(1), 91-102, 1994. Ruff R. Marshall L. Crouch J. et al., Predictors of Outcome Following Severe Head Trauma: Follow-up Data from the Traumatic Coma Data Bank. Brain Injury. 7(2), 101-111, 1993. Sander A. Kreutzer J. Rosenthal M. et al., A Multicenter Longitudinal Investigation of Return to Work and Community Integration following TBI. Journal of Head Trauma Rehabilitation. 11(5), 70-84, 1996. Shelley R. Griffin C. Hayes T. et al.: A New Formula for Success in Montana: Choice and Flexibility. In: Bringing Home the Bacon: Inventive Self-Employment & Supported Employment In Rural America. Missoula: Rural Institute, University of Montana, 1999. Van der Naalt J. Van Zomeren A. Sluiter W. et al., One Year Outcome in Mild to Moderate Head Injury: The Predictive Value of Acute Injury Characteristics related to Complaints and Return to Work. Journal of Neurology Neurosurgery and Psychiatry. 66(2), 207-213, 1999. Wall J. Niemczura J. & Rosenthal M, Community based Training and Employment: An Effective Program for Persons with Traumatic Brain Injury. NeuroRehabilitation. 10, 39-49, 1998. Wehman P. Kregel J. West M. et al., Return to Work for Patients with TBI: Analysis of Costs. American Journal of Physical Medicine & Rehabilitation. 73(4), 280-282, 1994. Wehman P. West M. Johnson A. et al.: Vocational Rehabilitation of Individuals with Traumatic Brain Injury. In: Rehabilitation of the Adult and Child with Traumatic Brain Injury, 3rd ed. Philadelphia: F.A. Davis, 1999. West M, Assisting Individuals with Brain Injuries to Return to Work: New Paradigms of Support. Journal of Vocational Rehabilitation. 7(3), 143-149, 1996. West M. Aspect of the Workplace and Return to Work for Persons with Brain Injury in Supported Employment. Brain Injury. 9(3), 301-313, 1995.

non-profit news BRAIN INJURY ASSOCIATION OF AMERICA It was an electric atmosphere at the Brain Injury Association of America (BIAA) this summer. Our air conditioners ran non-stop and so did our staff and volunteers! In June, BIAA circulated 5,000 Which Helmet for Which Activity brochures in partnership with the Consumer Product Safety Commission. We also hosted LAPS Walk (Leadership and Awareness to Promote Safety) events in July and August with affiliates in Pennsylvania and Michigan as part of our Race 2 Safety program headed by NASCAR Legend Ernie Irvan. In August, BIAA proudly co-sponsored the 7th Annual University of California Neurotrauma Meeting featuring topics as diverse as neurochemistry and biomarkers for TBI, physiological concepts in clinical research, Veterans Administration research and pediatric brain injury as well as presentations by young investigators. The long-awaited Caregivers Conference was a smashing success thanks in part to the NABIS leaders who volunteered their service as faculty members. Following the conference, BIAA added three new titles to the on-line bookstore. We encourage other authors to contact us about their publications. Our website, www.biausa. org, which is made possible by BIAA’s Corporate Sponsors, has more new content too. BIAA staff and volunteers are gearing up for the 2nd Business Practice College, taking place November 13-15 at the Tuscany Suites & Casino in Las Vegas. This is only meeting focusing exclusively on the “bottom line” of brain injury business. This summer, legislators introduced the TBI Act of 2006, and advocates successfully fought off President Bush’s attempt to eliminate the CDC and Health Resources and Services Administration Maternal and Child Health Federal TBI Program grants. TBI screening was added to the post-deployment health assessment for all personnel returning from combat, but we are fighting hard to reverse the inexpiable cuts to the DVBIC budget. This fall, BIAA will work with Capitol Hill staff to strengthen and fund TBI provisions in the “Heroes At Home” legislation sponsored by Senator Hilary Clinton (D-NY) and with Senator Barbara Milkulski (D-MD) on falls prevention legislation. We will continue participating in think-tank discussions on the Future of Public VR sponsored by the Council of State Administrators of Vocational Rehabilitation, and our Cognitive Rehabilitation Position Statement will be released this fall. BIAA welcomes your support as we create a better future for individuals, caregivers and professionals through brain injury prevention, research, education and advocacy.

BRAIN TRAUMA FOUNDATION The Brain Trauma Foundation (BTF) is perhaps best known for its ongoing commitment to the


development and implementation of evidencebased TBI guidelines. In 2005, BTF established a Center for Guidelines Management located at Oregon Health & Sciences University. The mandate of the Center is to apply rigorous and systematic protocols and parameters to ensure quality and consistency in each document. With classification of evidence one of the most challenging tasks, the Center collaborates with the Oregon Evidence-based Practice Center to conduct blinded assessments of the literature upon which guideline recommendations are based. Throughout 2006, BTF has been particularly active with Guidelines projects. The Guidelines for the Field Management of Combat-Related Head Trauma, supported through a grant from the Defense and Veterans Brain Injury Center, was published early in the year accompanied by a variety of training materials. The Guidelines for the Surgical Management of Traumatic Brain Injury, a joint venture with the Congress of Neurological Surgeons, was published in the June edition of Neurosurgery. An update of Early Indicators of Prognosis will begin in November. The third edition of the Guidelines for the Management of Severe Traumatic Brain Injury, a joint project with the American Association of Neurological Surgeons, will be published in the fall. The earlier sections on prehospital and prognosis have been eliminated and all the other previous topics updated with Mannitol expanded to Hyperosmolar Therapy and Barbiturates expanded to Anesthetics, Analgesics, and Sedatives. New topics are Effect of Guidelines-Based Protocols, Prophylactic Hypothermia, Brain Oxygen Monitoring and Treatment, Infection Prophylaxis, and Deep Vein Thrombosis Prophylaxis. Some topics, while considered important, were eliminated due to lack of a literature base (e.g., At-Risk Non-Comatose Patient, Hyperacute Rehabilitation, ICP in the Elderly, and Decompressive Therapies). Almost simultaneously, the second edition of the Guidelines for Prehospital Management of Traumatic Brain Injury is progressing towards a late fall publication date. This document, created with support from the National Highway Traffic Safety Administration Office of EMS, contains three chapters on Assessment topics and four on Treatment topics each with separate pediatric data. Because a preliminary search revealed insufficient literature to support a Prevention topic, the descriptive findings and future research for prevention are discussed in the Introduction. For the latest on the TBI Guidelines, please visit www.braintrauma.org.

INTERNATIONAL BRAIN INJURY ASSOCIATION IBIA is pleased to announce that we are planning on having a meeting in 2007 even though

the originally planned meeting to be held in Jerusalem could not, unfortunately, proceed. Currently, the plan is to have the meeting in the latter part of 2007 in Western Europe. Please stay tuned for further details. IBIA continues to publish the NeuroTrauma Letter (NTL) four times per year and we are requesting interested contributors to contact Dr. Zasler with submission ideas (e-mail: nzasler@ cccv-ltd.com). We encourage individuals to join the organization to reap the benefits of membership including the journal Brain Injury, our newsletter, use of our listserve and discounts to our professional meetings. Currently, IBIA’s numerous subcommittees are hard at work on myriad issues in an attempt to move the organization both politically and scientifically forward in the world neuroscience community. The strategic planning committee led by Dr. Donald Stein of the USA is working on long-term development issues in conjunction with the finance and fundraising committee led by Dr. Zasler. The by-laws committee, chaired by Dr. Leon-Carrion of Spain, is examining the current by-laws structure of IBIA and will make recommendations to the Board of Governors regarding recommended changes to keep IBIA streamlined and functioning optimally. Dr. Lucia Braga of Brazil has kindly accepted taking over the dissemination and education subcommittee from Dr. Erin Bigler who, unfortunately, has to resign due to family issues. Dr. Braga and her committee will be assisting IBIA in developing educational programs including facilitating the International Scientific Affairs Committee for the 2007 Meeting in Europe. IBIA is also pleased to announce the Dr. Henry H. Stonnington Award for best review paper which will be given through the IBIA’s official research journal, “Brain Injury,” co-edited by Jeffery Kreutzer, Ph.D. and Nathan D. Zasler, M.D. Please refer to the journal’s website at Taylor & Francis: www.tandf.co.uk/journals/titles/02699052.asp for further details on the journal and the award. The Henry Stonnington award will be given annually to the best scientific review paper commencing in 2007 with a first place award of $1,000 and second place award of $500 USD. IBIA is also honored to announce the development of the Lifetime Achievement Award for contributions to the field of brain injury medicine. More information to follow. The first award will be given at the 2007 IBIA meeting.

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS The National Association of State Head Injury Administrators (NASHIA) had its 17th Annual State of States in Head Injury meeting September 6-9 in Baltimore, MD. Nearly 200 State Agency administrators, advocates and providers gathered to hear the latest issues on the econom-

ics, ethics and enlightenment in delivering TBI services and supports. Check out the NASHIA website www.nashia.org to find copies of presentations and materials from the meeting. Our efforts continue to advocate for reauthorization of and funding for the Traumatic Brain Injury (TBI) Act. The reauthorization of the TBI Act has been introduced in both the House and Senate. The House and Senate appropriations committees have also inserted $8.91 million of funding for the United States Department of Health and Human Services, Health Resources and Services Administration (HRSA) Federal TBI Program funded through the TBI Act after the President’s budget had eliminated funding. We remain concerned that the increased pressures on federal social spending may reduce TBI Act funding as part of the final appropriations negotiations. Furthermore, NASHIA feels that funding is woefully inadequate to support the needed changes in State systems and services. Additional funding is needed so that States can create sustainable infrastructure changes and address the gaps and fragmentation in services. Keep up on the latest activities by visiting the policy section of the NASHIA website.

NORTH AMERICAN BRAIN INJURY SOCIETY Brain injury professionals from all over North and Latin America gathered in Miami, Florida, for the Brain Injury Conference of Americas in September. Conference chairperson, Ronald Savage, MEd, worked with section chairs Micky Collins, PhD, Michael Pietrzak, MD, David Seaton, Elisabeth Sherwin, PhD, Bruce Stern, JD and Robert Voogt, PhD, to assemble an outstanding group of over 60 presenters who covered the latest in brain injury treatment, research and rehabilitation. One highlight of the event was the Blast Injuries Panel, moderated by Michael Pietrzak, MD, which addresses the growing issue of this particular type of wartime injury. Look for an entire issue of this publication devoted to the topic of blast injuries edited by Tina Trudel, PhD, in the coming months. The Conference was also the occasion for NABIS to present its three annual awards, which recognize individuals who have made a significant contribution to the field over the last year. This years’ recipients and their respective categories, were: Brent Masel, MD – Clinical Erin Bigler, PhD – Research Jean Langlois, ScD – Public Policy Finally, it is not too early to mark your calendars for next year’s NABIS conference, scheduled for October, 2007. Details will be posted on www.nabis.org as they become available. BRAIN INJURY PROFESSIONAL

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Key Issues in Assessing Economic Damages in Cases of Acquired Brain Injury

Key Issues in Assessing Economic Damages in Cases of Acquired Brain Injury

BY A. M. GAMBOA, JR., PhD, MBA Acquired Brain Injury (ABI) often results in litigation. But only when it is recognized. And it is often unrecognized. Prior to the early 1980s, brain trauma occurring at birth through adulthood, resulting in diminished cognitive or personality functioning, was attributed to something other than an alteration of basic biochemical or electrical brain function. Establishing a cause-and-effect relationship between head trauma and a diminution of cognitive or personality function has been and continues to be a challenge for neuroscientists. Most recently, the U.S. Department of Commerce, Bureau of the Census, began collecting data specific to persons identified as having difficulty learning, remembering, or concentrating because of a physical, mental, or emotional condition lasting 6 months or more. Beginning with 2000 Decennial Census and continuing with the more recent American Community Survey (ACS), both earning data and employment data are available specific to such persons. Earnings of year-round, full-time employed persons identified as having problems with learning, remembering, or concentrating provide an excellent estimate of earning capability for persons with “mild traumatic brain injury” who are capable of employment. Similarly, the employment levels of such persons provide a basis for defining worklife expectancy. When wrongful ABI is recognized and causality is established between the injury and the diminution of cognitive or personality functions, litigation often results. Damages that are measurable in such a case include loss of earning capacity and monies needed for future health and medical care defined through the preparation of a Life Care Plan (LCP). When ABI is severe or catastrophic, a Life Care Plan and a Vocational Economic Assessment are essential, while mild ABI will result typically in a loss of earning capacity only. The purpose of this article is to examine critical issues specific to measuring economic damages in cases of severe or catastrophic ABI and economic damages in cases of mild ABI, when only a future loss of earning capacity exists. Severe or catastrophic ABI typically results in measurable damages in the millions of dollars. The LCP is the single most important assessment in such a case followed by an analysis of lost earning capacity. A variety of professionals produce LCP’s, but each plan is almost always evaluated by an expert familiar with the present value of future health and medical care costs. While a variety of professionals perform the present value (PV) calculation, it is stunning to note that some professionals arrived at PV through use of a net positive discount (NPD). An NPD means that an item with the current cost of $1,000 per year over a life expectancy of 70 years is defined in terms of a present value requiring less money than $70,000. How can this occur? Simple, the expert concludes that the growth factor for the item will be less than the discount factor or the return on the investment (ROI) over a 70 year period. By way of example, discounting the $1,000 per year over a 70 year period will result in a PV of $50,169 with an NPD of 1%, $37,499 with 2%, and $29,123 with 3%. Stern (2005) notes that because of conventional wisdom, it is generally believed that discounting to present value requires a sum of money that 36 BRAIN INJURY PROFESSIONAL

must be less than that produced by simply multiplying the dollar amount of the item by the number of years it is needed into the future. While this is incorrect, it is generally believed to be true by many practicing attorneys. In reality, present value of future health and medical care can justifiably result in a net negative discount (NND), which means that the present value is greater than that arrived at through use of a pure offset, or net neutral discount. An NPD reduces the present value of future health and medical care costs from that of a pure offset. There is little justification for using an NPD when forecasting future health and medical care items. Table 1 examines return on investment and patterns of growth for various health-related items over varying time periods. An inspection of the table reveals that an NPD can only be justified when forecasting medical commodities. Medical and hospital-related services consistently exceed the ROI for all of the time periods listed. There is little to no justification for an NPD when a risk-free rate investment or discount, such as a 91-day Treasury Bill, is employed. Such an investment vehicle is referenced in the U.S. Supreme Court case Jones and Laughlin Steel v. Pfeifer case (462 US 523, 1983). Persons who are catastrophically injured require a substantial amount of future health and medical care. The costs are considerable. Given the reality of historical patterns with regard to growth and ROI, it is essential for attorneys to prohibit experts from decreasing the present value of future health and medical care through use of an NPD. While the present value calculation is significant in determining appropriate monies for future health and medical care, all approaches to arrive at present value significantly understate the monies that will be needed when the tax liability on the ROI is ignored. While the money awarded to a plaintiff is tax free, the ROI has a tax liability attached to it. While a structured settlement can be purchased that avoids tax liability, such an investment should only be secured after the correct present value of the life care plan is determined. While the present value calculation produces substantial differences in PV depending upon whether an NPD, net neutral

Average Annual Growth and Interest Rates

TABLE 1

(Shown in Percentages)

Period

Medical Services1

Hospital & Related Services1

Medical Commod.1

Compensation2

Interest Rate*3

1947 2005

6.0

7.4

3.5

5.6

4.9

1955-2005

6.3

7.8

3.8

5.6

5.5

1965 2005

7.0

8.6

4.6

5.9

6.1

1975 2005

6.8

8.4

5.6

5.3

6.2

1985 2005

5.6

6.9

4.5

4.2

4.7

1995 2005

4.2

5.5

3.0

4.6

3.7

1. U.S. Bureau of Labor Statistics. Consumer Price Index, All Urban Consumers (CPI U), U.S. City Average. 2. U.S. Bureau of Labor Statistics. Major Sector Productivity and Costs Index: Hourly Compensation. 3. Federal Reserve Bank. 3-Month Treasury Bill Rate (Secondary Market), Averages of 1947 to 2005 Daily Closing Bid Prices. *Ninety one day U.S. Treasury Bill Yields


discount, or an NND is employed, the differences pale in comparison to the effect of taxation on the ROI of the life care plan corpus. A 23-year-old female sustained anoxic brain injury secondary to cardiopulmonary arrest. A life care plan resulted in a present value cost of future health and medical care of $35.3 million. The plaintiff is identified as having a normal life expectancy of 57.8 years. When consideration is given to the tax impact on the ROI, a $20.8 million tax liability results over the life expectancy of the individual. The tax liability becomes an “add-back” to the present value resulting in a total amount needed of $56.1 million. While the example is from an actual case with an unusually high present value sum, it is important to note that the tax impact on a life care plan may increase the present value by up to 30%. Without such a calculation, the plaintiff will have insufficient funds to care for future health and medical care needs. While cases of catastrophic injury produce total loss of earning capacity, mild ABI often results in a residual functional capacity to perform work and earn money. The ACS conducted by the U.S. Census Bureau provides us with both earning and employment data specific to persons having problems with learning, remembering, and concentrating. The data collected using this definition provide an excellent estimate of earnings and employment levels for persons sustaining mild ABI. Because employment levels, when considered in combination with a probability of life, form the building blocks of a worklife expectancy, it is recognized that such persons experience a reduction in probable worklife. Data from the ACS is congruent with clinical assessments of professionals who work with ABI clients in a vocational setting. Such individuals will often obtain but have considerable difficulty retaining employment. A 24-year-old recent college graduate with ABI is referred for a loss of earning capacity analysis. It is generally agreed that the individual retains the capacity to perform a wide variety of different occupations. The undergraduate major was in communications, and the individual is presently employed as a substitute teacher, but is spending two days a week trying to obtain employment in the area of his major. He completed college with the aid of tutors as well as untimed tests. While he is employable, it is questionable as to whether or not he will obtain and retain employment congruent with a baccalaureate degree. The analysis of loss of earning capacity is conducted from two perspectives. The first assumes employment specific to males with a baccalaureate degree pre- and post-injury, while the second assumes post-injury employment specific to male high school graduates. Year-round, full-time employed males with a baccalaureate degree who are not disabled earn at an average rate of $80,344 over the adult work years. Those year-round, full-time employed males with a baccalaureate degree identified as problems with learning, remembering, and concentrating earn at an average rate of $58,527 per year. Worklife expectancies specific to no disability and cognitive disability are reported out at 36.5 years and 26.4 years, respectively (Gamboa and Gibson, 2006). When consideration is given to fringe benefits at a national average rate of 26%, the lifetime loss of expected earnings is $1.7 million. Males with a high school diploma who are identified as having problems with learning, remembering, and concentrating earn at an average rate of $36,481 per year when employed year-round, full-time. Based on a worklife expectancy for such persons of 20.1 years and fringe benefits of 26%, the lifetime loss of expected earnings is $2.8 million. Economic damages are typically defined by economists or vocational economic analysts. Attorneys who retain such experts need to become more sophisticated consumers of economic services. As noted by Stern (2005): “Do we really want to hire economists who unnecessarily take money away from our clients by using a positive net discount?”

LiveOakLiving.com

F O R A D U LT S

WITH

COGNITIVE DISABILITIES

ABOUT THE AUTHOR

Dr. Gamboa is Senior Analyst and CEO of Vocational Economics, Inc. He works out of the Miami, Florida office.

REFERENCES

Gamboa, Anthony M., Jr., and David S. Gibson. The New Worklife Expectancy Tables: Revised 2006; By Gender, Level of Educational Attainment, and Level of Disability. Louisville, KY: Vocational Econometrics, Inc., 2006. Stern, Bruce H. “Discounting to Present Value: Is It Necessary to Reduce?” 2005. U.S. Census Bureau. American Community Survey. http://www.census.gov/acs/www/index.html.

David Seaton, Owner/CEO • ds@tc-tx.com • 512.371.1078 4314 Medical Parkway, Suite 201, Austin, Texas 78756

BRAIN INJURY PROFESSIONAL

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Brain Injury Professional, vol. 3 issue 3  
Brain Injury Professional, vol. 3 issue 3  

Vocational Issues in Traumatic Brain Injury

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