Poverty and Brain Injury

BR A IN INJURY professional vol. 11 issue 1

The official publication of the North American Brain Injury Society

Special issue on poverty, education, employment, policy reform and advocacy

Children, Poverty, and Acquired Brain Injury: In Search of Best Neurorehabilitation and Educational Practices Getting to Work: The Challenges Associated With Race, Poverty, and Acquired Brain Injury A Roadmap to a 21st-Century Disability Policy for People with Brain Injury and Other Disabilities Poverty, Disability, and Social Justice: A Discussion with John A. Lancaster

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contents

BRAIN INJURY professional vol. 11 issue 1

The official publication of the North American Brain Injury Society

north american brain injury society

departments 4 editor in chief’s message 6 guest editor’s message 26 legal spotlight 30 literature review

chairman Mariusz Ziejewski, PhD VICE CHAIR Debra Braunling-McMorrow, PhD Immediate Past Chair Ronald C. Savage, EdD treasurer Bruce H. Stern, Esq. family Liaison Skye MacQueen executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Megan Bell graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes

brain injury professional

34 legislative roundup

publisher J. Charles Haynes, JD Editor in Chief Ronald C. Savage, EdD Editor, Legal Issues Frank Toral, Esq. Editor, Legislative Issues Susan L. Vaughn Editor, Literature Review Debra Braunling-McMorrow, PhD Editor, Technology Tina Trudel, PhD founding editor Donald G. Stein, PhD design and layout Nick Alexeev advertising sales Megan Bell

features

EDITORIAL ADVISORY BOARD

32 non-profit news

8 Children, Poverty, and Acquired Brain Injury: In Search of Best

Neurorehabilitation and Educational Practices

by Charles J. Durgin, MS, MSEd 12 Getting to Work: The Challenges Associated With Race, Poverty,

and Acquired Brain Injury

By Charles Dillard, MD, Paul Wehman, PhD, Karine S. Nersessova, BS, Michael West, PhD, and Pamela Sherron Targett, MEd 18 A Roadmap to a 21st-Century Disability Policy for People with Brain

Injury and Other Disabilities

By David R. Mann, PhD, David C. Stapleton, PhD, and Bonnie L. O’Day, PhD 22 Poverty, Disability, and Social Justice: A Discussion with John A.

Lancaster

BY CHARLES J. DURGIN, MS, MSEd, ANASTASIA B. EDMONSTON, MS, CRC, JESSICA GRUBBS, MSEd, AND KACHERA JONES

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

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

advertising inquiries Megan Bell Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Email: mbell@hdipub.com

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. © 2014 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 mbell@hdipub.com

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editor in chief’s message

Ronald Savage, EdD This issue of BIP covers a topic that while underrepresented in the literature, is overwhelming in real life – poverty and brain injury. Thousands and thousands of people end up in poverty each year not just because of recessions and job losses, but

because of brain injuries. While we clearly recognize the impact that brain injury can have on cognition, behavior, and mobility, we also recognize the impact brain injury can have on independent living, work, relationships, and one’s quality of life.

These complex challenges, despite all our therapies, services and supports, often leaves individuals struggling in poverty and surviving on the edges of life.

Charles “Chuck” Durgin, a longtime advocate for individuals with disabilities, has pulled together some of the leading experts in the country to write about the critical issue of brain injury and poverty. As Charles states, “…most practitioners also recognize how poverty can significantly compromise human potential, complicate neurorehabilitation, and undermine the wellbeing of people with acquired brain injury (ABI) and their families.”

In particular, the thoughtful discussion with John A. Lancaster (former Executive Director of the National Council on Independent Living (NCIL), the oldest disability grassroots organization run by

and for people with disabilities) about poverty, disability, and human rights in this day in age is both provoking and encouraging.

NABIS thanks Charles and his authors for a comprehensive look at a very complex topic.

It is also my pleasure to announce that Dr. Debra Braunling-McMorrow will be taking over as Editor-in Chief of Brain Injury Professional. Dr. McMorrow is a nationally recognized leader with over 30 years of experience in post acute neurorehabilitation, neurobehavioral and supported living services for individuals with brain injuries. Dr. McMorrow is also past chairperson of the Academy for the Certification of Brain Injury Specialists (ACBIS), is widely published, and is a much sought after speaker. She is currently the President and CEO of Learning Services and serves on the NABIS Board of Directors.

I am very proud to turn over the BIP reins to such an intelligent and accomplished colleague.

Debra Braunling-McMorrow, PhD

I am honored to be taking on the role of Editor-in-Chief of Brain Injury Professional, the official publication of the North American Brain Injury Society.

Many of you may not realize that the BIP, in partnership with HDI Publishers, has a distribution of over 6,000 print copies per issue, making it the largest professional circulation publication on the subject of brain injury in the world. I want to thank Dr. Ron Savage for his many years of service to the BIP. Ron’s vision was to make the BIP the Time Magazine of brain injury, providing an in depth look at many of the most challenging and contemporary issues impacting those with brain injuries, their families, and the many who provide service and advocacy for them. Given our world-wide distribution, I think Dr. Savage has splendidly reached this

accomplishment. Thank you Ron. In our upcoming issues you can count on our continuing to feature Special Edition Editors on key topics, legislative updates, literature/media reviews, and insightful interviews with experts in brain injury and related fields. Among those featured in 2014 will be an International Edition by Fofi Constantinadiou and Chris MacDonell and an edition on current and future payment and delivery of care models with an ever increasing focus on quality and cost containment.

I will also attempt to match some special editions with NABIS conference tracks such as medical/clinical issues, innovative technology and life-long living.

I welcome your input as we continue to ensure that the BIP continues to meet the needs of our readers.

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guest editors’ message

Charles J. Durgin, MS, MSEd In many respects, given the nature of our work we as neurorehabilitation practitioners see and experience the world differently than many others – both the good and bad. The highs and lows as well. We inevitably see personal losses, tragedies, heightened vulnerabilities, and human suffering.

Yet we also see remarkable achievements, compassion, self-less giving, stunning gains, personal growth, and compelling breakthroughs. Oftentimes we are witness to and a part of hard-won victories, many beyond our initial expectations, all inspirational in their own special way. Moreover, given the staggering prevalence of poverty and the farreaching consequences that are so pervasive and disruptive in our society and to those we serve, most practitioners also recognize how poverty can significantly compromise human potential, complicate neurorehabilitation, and undermine the wellbeing of people with acquired brain injury (ABI) and their families.

To address these concerns this edition of Brain Injury Professional (BIP) focuses on poverty, success in school and at work, policy reform, and advocacy. The first article by Durgin discusses the needs of children with ABI and their families who are impacted by poverty and the related hard-

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ships. A variety of models and treatment recommendations are presented that encourage greater levels of practitioner outreach and stakeholder collaboration.

Next, Dillard, Wehman, Nersessova, West, and Targett provide a comprehensive overview of the employment challenges associated with race, poverty, and ABI. They identify barriers that can complicate and interfere with successful employment and discuss a broad spectrum of therapeutic interventions as well as work-based supports that can lead to positive outcomes.

In the article by Mann, Stapleton, and O’Day the authors provide a critical review of how current disability policies fail those that they are intended to help.

They discuss structural flaws and systems gaps that not only result in rising costs but fail to improve the financial status and economic security of people with disabilities.

Program reforms are identified to support people with sufficient work capacity while protecting those who need more assistance.

Included in this issue is an excellent discussion with John A. Lancaster, a lifelong and highly accomplished disability advocate who brings in personal, historical, political, legal, and international perspectives on social justice. His insights prompt us to not only recognize the progress that has been made over the years, but in his characteristic style, he continues to stress the critical importance of activism, advocacy, and leadership.

Drawing upon their community-based work, the program description by Whitehead and Freeman highlights core techniques and service principles that they use in Colorado to help people with brain injury build supports and develop meaningful community connections.

Taken together, I hope this issue offers helpful resources and serves as a stimulus to encourage professionals to learn more about the challenges associated with ABI, poverty, and disability. I urge every reader

(if you do not already) to routinely explore the research, various definitions of poverty, data, policy briefs, legislative forces, lifelines, support systems, and personal stories within this area of great concern. Reviewing this material will inform practice on many levels. This includes finding creative ways to build upon personal, family, and community strengths, in addition to capitalizing on untapped resources that may not be evident or accessible without substantial outreach and formal investigation. Finally, if there is one overarching and universal message associated with the articles presented, it would be to encourage all practitioners, and citizens for that matter, never to underestimate the power that we all have to bring about positive and meaningful change.

Acknowledgements I would like to extend my sincere gratitude to all contributing authors who devoted their time and considerable expertise to this publication. I have been most fortunate to reconnect with former collaborators and to develop new professional associations and resources as well. Taking on this task was overwhelming at times and the ongoing support of Ron Savage and Chas Haynes has been invaluable throughout. I would also like to thank Mark R. Rank (and his co-authors) and Alana Podolsky at Oxford University Press for sharing an advanced copy of their book Chasing the American Dream: Understanding What Shapes Our Fortunes for review by Deb Braunling-McMorrow.

Dedication This issue of BIP is dedicated to those individuals for whom it is intended to help - people with brain injury and their family members who also have to contend with severe social and economic disadvantages, thereby making their journey far more difficult than it should ever have to be.

Charles J. Durgin, MS, MSEd

A brain injury doesn’t have to be a disability.

In each patient we only see capability, viability, possibility, mobility, sustainability, ability.

For over 30 years Centre for Neuro Skills (CNS) has been recognized as an experienced and respected world leader for providing intensive postacute community based brain injury rehabilitation. With facilities in Texas and California, CNS’ highly trained staff offers outcome driven medical treatment, therapeutic rehabilitation and disease management services for individuals recovering from acquired and traumatic brain injury. We’re the bridge to a meaningful recovery. For additional information about Centre for Neuro Skills, please visit us at neuroskills.com or call us at 800.554.5448.

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Children, Poverty, and Acquired Brain Injury: In Search of Best Neurorehabilitation and Educational Practices

Charles J. Durgin, MS, MSEd

This article presents a variety of models, perspectives, and guidelines aimed at expanding professional insight and offering intervention strategies. The intended purpose is to help practitioners to better address the needs of children with acquired brain injury (ABI) and their families who are also experiencing severe socioeconomic disadvantages. The overarching premise and belief behind this material is that well-conceived interventions can help prevent problems, enhance child learning and growth, strengthen family systems, and improve the quality of community-based supports, even in the most challenging situations.

Risks, Rewards, Obstacles, & Opportunities

Few challenges in life rival the clinical complexities and human struggles associated with a child sustaining a serious neurological injury. When this type of trauma and the related difficulties are compounded by poverty or severe social-economic hardships the treatment process, educational programming, and/or adjustment to the injury is often negatively impacted. Additionally, the risk factors associated with brain injury (see Table 1), family stress and instability, as well as day-to-day adversities can increase dramatically, thereby making positive outcomes harder to obtain.

Individuals and families impacted by ABI who live each day with unyielding financial difficulties and the associated problems that frequently co-exist often have multiple, cumulative, complex, and psychologically stressful obstacles to overcome, in addition to the problems caused by the brain injury itself. This may include 8

BRAIN INJURY PROFESSIONAL

but is not limited to problems such as homelessness, unstable housing, transient living, unemployment, hunger, food insecurity, unsafe neighborhoods, voids in recreational or social activities, substandard schools and career development opportunities, inability to pay for basic necessities, inadequate heath care, gaps in access to professional supports, transportation/mobility restrictions, and/ or residing in severely under resourced communities.

Figure 1 – Poverty, Socio-Economic Disadvantages, & Neurorehabilitation profiles some of the challenges that too often threaten the prospects of living a safe, productive, satisfying, and fully dignified life for those who sustain an ABI and who are in deep poverty, near poverty, or have been propelled into a devastating life-altering financial crisis. Failure to understand and account for these variables and to strategically address critical barriers, where possible, will in effect limit the effectiveness of professional interventions and community-based supports.

Positive Outcome Attainment

Figure 2 presents a Positive Outcome Equation for your review and consideration: O = f(K, S,O,R). It highlights the critical neurodevelopmental gains (Knowledge & Skills) and external supports (Opportunities & Resources) that must be addressed over time to achieve a positive outcome. In short, for children and youth Outcomes are a Function of KNOWLEDGE + SKILLS + OPPORTUNITIES + RESOURCES. The intent of this model is to lay bare if you will, the realities associated with getting results that are personally meaningful and

table 1

Examples of Medical, Social, Psychological, and Financial Risk Factors Following a Brain Injury

Medical & Health Related Complications

• Accidents due to poor judgment or balance problems • Musculoskeletal complications due to idle activity and/or poor positioning • Sustaining another brain injury or health-related setback

Emotional, Behavioral, & Psychiatric Problems

• Behavioral changes • Depression/mood disturbances/temperament changes • Loneliness/self-imposed isolation

Being Taken Advantage of by Others

• Financially (income, prior holdings, settlements, etc.)

• Abuse/neglect issues • Sexually (particularly for women)

Loss of Opportunities for Meaningful & Productive Roles

• Employment • Education/vocational training/career development • Inability to maintain or acquire valued roles (husband, wife, parent, etc.)

Increased Dependency on Others

• Family members (impacting the health status within the family system) • Social service and/or state agency dependence • Participation in ineffective or unnecessary professional services

Substance Use & Abuse

• Alcohol • Illegal drugs • Prescription medications

Loss of a Social Network & Support System

• Immediate and extended family • Friends • Formal and informal community contacts and supports

Legal Problems

• Unlawful or risky actions that jeopardize the person with the injury or others • Financial management problems • Guardianship, marriage, and custody issues

Note: Adapted from “Increasing community participation after brain injury: Strategies for identifying and reducing the risks,” by C.J. Durgin, 2000, Journal of Head Trauma Rehabilitation, 15(6), p. 1197. Reprinted with permission.

figure 1

Social and Economic Disadvantages Present Complex Barriers to Outcome Attainment.

Onset of Injury

Sequelae of ABI

Developmental Variables

Ongoing Learning & Personal Growth Educational Programming & Career Development Family Life, Socialization, & Developmental Transitions

Poverty and Related Challenges

Financial Hardships Lack of Affordable Health Care Struggles to Take Care of Basic Needs Presence of Environmental Risks and/or Temptations Inadequate Family Resources Voids in Community Supports Competing Priorities Impacting Time/Energy Limited Networks of Support & Risk of Isolation Problems Navigating a Fragmented Service System Diminished Access to High Quality Professional Services Insufficient Economic Opportunities Encounters with Discriminatory Attitudes & Practices Confusion, Overload, & Feelings of Helplessness Intensified Emotional Distress

sensitive to the many unique circumstances, contexts, influences, and forces that impact a child’s life. The Blue Target Zone on the left side of the equation (Neurorehabilitation & Educational Programming) represents interventions and supports that are typically offered in structured, formal, and/or controlled professional service settings. These can be thought of as contexts of significant professional influence. The Red Target Zone (Home & Community-Based Interventions) represents the second half of the equation and highlights the critical need to have services impact across settings and over time. This is traditionally an area of less specialized professional involvement and influence, particularly as the individual moves further and further away from inpatient care and/ or intensive neurorehabilitation. The argument that this model presents is as follows: If any one of the four variables that make up this equation is missing or compromised, the individual’s ability to reach their true potential is lost and/or diminished.

This in turn raises a number of questions for individual practitioners, program leaders, researchers, policy makers, accreditation organizations, reimbursement agents, and educators.

What is our scope of practice and sphere of influence? Do our

Outcome Attainment for Children with ABI is a Function of Impacting Four Critical Areas

figure 2 Knowledge

+

Skills

Improving the Individual’s Abilities & their Capacity to be Self-Determined Neurorehabilitation & Educational Programming

Designing Interventions that Enhance the Rate & Level of Recovery/Improvement & Ongoing Learning

+

Opportunities

+

Resources

Impacting the Physical & Social Environment

(family, friends, school, work, community supports, etc.)

Home & Community-Based Interventions

Developing Meaningful, Customized, & Durable Supports that Impact Across Settings & Over Time

Positive Outcome Equation O = f(K,S,O,R)

professional insights and treatment recommendations reach far enough and follow the individual long enough to ensure that we will have the greatest impact? What degree of influence and/or responsibility do we have for outreach, advocacy, building new and diverse collaborative partnerships, and engaging the outside world? Are we willing to extend ourselves, perhaps go outside our comfort zone to make things happen, assuming that we are operating within the boundaries of our discipline standards of practice, professional roles, and program design? Are those practices too narrowly defined when it comes to serving people who are in the most disadvantaged and impoverished circumstances?

Do we believe that we can really make a significant difference?

The conceptual underpinnings of the Positive Outcome Attainment model challenges us in our daily work to ask – To what extent does best practice knowledge live in the life of people with ABI who will likely benefit? Whether they are rich or poor, young or old, mild or severely injured, or if they reside in urban, suburban or rural neighborhoods? If the answer is that our impact is “significantly limited or non-existent” in this regard, then what can we do about it? These are not just moral or philosophical questions or dilemmas of clinical practice and educational programming. Nor are these questions rooted in quixotic desires and motives that may be reaching too high. In the end, beating the odds and attaining outcomes is often a matter of highly focused interventions and strategic intent over time, combined with shear tenacity and a willingness to find ways to deepening our insight to each individual’s circumstance in order to increase the potency and effectiveness of our collective work (Durgin, Gioia, & colleagues, 2010).

The stakes are high. For children with ABI given their dependency and incomplete developmental status this means that access to high-quality neurorehabilitation and educational expertise post-onset and during the developmental years is critical. Short-term gains and future success hinges on accessing services, placements, personal relationships, social activities, and/ or community connections that are accepting, knowledgeable, confident, positive, motivating, flexible, and imaginative. Yet to this day many professional, human service and natural support systems are well-intentioned but ill-informed and ill-equipped.

Consequently, many supports need to be found, modified, nurtured, and/or created. In this respect the work of Acker (1990) presented in Table 2 reinforces a number of critical points when it comes to serving people with brain injury as they take on the challenges of everyday living. It highlights the importance of understanding how ABI can present so differently in therapeutic BRAIN INJURY PROFESSIONAL

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Moving from Specialized Educational and Clinical Settings into the Real World

TABLE table 2 Therapeutic Therapeutic Settings Settings

Everyday Everyday Life Life

Structured Structured

Unstructured Unstructured

Assisted Assisted inin Task Task Focus Focus

Limited Limited Task Task Focus Focus Provided Provided

Non-Punitive Non-Punitive Setting Setting

Criticism Criticism && Consequences Consequences Occur Occur

Motivation Motivation isis Facilitated Facilitated

Self-Motivation Self-Motivation Necessary Necessary

Persistence Persistence Encouraged Encouraged

Persistence Persistence Up Up to to the the Individual Individual

Support Support for for Executive Executive Skill Skill Performance Performance

Executive Executive Skills Skills Controlled Controlled by by the the Individual Individual

Protective Protective Environment Environment

Minimally Minimally Protective Protective Milieu Milieu

Failure Failure Not Not Emphasized Emphasized

Fear Fear Of Of && Exposure Exposure To To Failure Failure

Inadequacies Inadequacies Not Not Exposed Exposed

Limitations Limitations Visible Visible to to Self Self && Others Others

Competition Competition Absent Absent

Competition Competition Present Present

Access Access to to Psychological Psychological Supports Supports

Limited Limited Psychological Psychological Supports Supports

Prevention-Driven Prevention-Driven Efforts Efforts

Reactive Reactive Responses Responses

Demands Demands Tailored Tailored to to the the Individual Individual

Unpredictable Unpredictable && Complex Complex Demands Demands

Note: Note: Adapted Adapted from from “A “A review review of of the the ecological ecological validity validity of of neuropsychological neuropsychological tests,” tests,” by

by M.B. M.B. Acker, Acker, 1990, 1990, In In D.E. D.E. Tupper, The Neuropsychology Neuropsychology of of Everyday Everyday Life: Life: Assessment Assessment and and Basic Basic Competencies Competencies.. p. p. 48.

48.

Tupper, K.D. K.D. Cicerone Cicerone (Eds.), (Eds.), The Published Published with with kind kind permission permission from from Springer Springer Science+Business Science+Business Media Media B.V. B.V.

vs. real world settings and the need to consider these significant contextual differences when reaching out to and collaborating with all stakeholders.

The Poverty-Disability Link in Developing Countries

Gerstenbrand and Binder (2006) note that in the extremes of neurorehabilitation practice the world is divided into two parts, with affluent nations struggling with costs and access to advanced treatments while undeveloped regions are besieged with infectious diseases, hunger, and poverty, in addition to disabilityspecific needs which receive far less attention. In an effort to bring attention to the vicious cycle of poverty and disability in developing countries, Yeo & Moore (2003) created two integrated models that show: A) why people with disabilities experience disproportionally high rates of poverty, and B) ways that poverty can increase an individual’s risk of acquiring an impairment resulting in disability (see Figure 3). These are worthwhile models to consider when analyzing how negative external influences can harm, trap, threaten, and/or overcome vulnerable individuals. Taken together they highlight the social, environmental, health care, economic, institutional, and attitudinal forces that can either enhance or compromise the wellbeing of persons impacted by ABI (or any significant disability) who live in extremely impoverished communities or conditions.

10 BRAIN INJURY INJURY PROFESSIONAL PROFESSIONAL 10 BRAIN

FIGURE figure 3

Without question, many developing countries are not able to enforce basic social protections and provide minimal socioeconomic opportunities to the individuals who wish to move their lives forward, whether they have a disability or not. Consequently, as is so often the case in these circumstances, young children, women, minorities, elderly persons, and individuals with significant disabilities and/or medical needs suffer greatly and disproportionately. However, as is the purpose for developing this poverty-disability framework, understanding the nature and scope of the presenting problems within the individual, family, cultural, and historical contexts can help professionals, activists, political leaders, policy makers, support agencies, and the like to identify the most promising interventions to strategically address the problems at hand. These are among the most urgent, profoundly difficult, and heartbreaking challenges that call for the highest levels of humanitarian support and advocacy.

Advanced Practice Strategies

The competency areas and strategies presented in Table 3 provide recommendations for neurorehabilitation practitioners and educators. They are not technical, discipline-specific content areas but focus on building high-value working partnerships and networks, which in turn can enable professionals to use their knowledge and skills to maximum effect. Many of the strategies are similar to person-centered planning principles and the use of subjective reports to define quality of life needs, service preferences, and meaningful opportunities, all of which are considered to be the gold standard

Poverty Cycles in Developing Nations

The The vicious vicious cycle cycle of of poverty poverty and and disability disability inin developing developing nations. nations. Reprinted Reprinted from from “Including “Including disabled disabled people people inin poverty poverty reduction reduction work: work: ‘Nothing ‘Nothing about about us, us, without without us,’” us,’” by by R. R. Yeo Yeo and and K. K. Moore, Moore, 2003, 2003, World World Development, Development, 31(3), 31(3), pp. pp. 572-573.

572-573. Reprinted Reprinted with with permission. permission.

table 3

Brain Injury and Poverty: Strategies to Enhance Professional Practice

Competency Areas

Strategies

Therapeutic Rapport

• Devote extra time to establish confidence and trust when there are cultural, linguistic, experiential, knowledge, ethnic, age, gender, and/or class differences that may impose a comfort or communication barrier.

Communication

• Emphasize listening, clarifying, identifying priority concerns, and exploring subjective points of view.

• Ensure that the flow of information is multidirectional among all critical stakeholders to facilitate a clear and mutual understanding of the issues and concerns (breath/depth).

Risk & Resource Assessment

• Formally investigate the social and environmental risk factors that may threaten outcome attainment and quality of life (home, school, community).

• Explore all resources, family/community strengths, and positive supports that can enhance the rate and level of improvement and overall wellness.

Linkages & Networks

• Establish a network of meaningful community resources that can ensure access to social activities, advocacy support, benefits counseling, case management assistance, family services, health care, and/or legal advice.

Outreach & Collaboration

• Pursue opportunities to work with extended family and outside agencies in real world settings.

• Reach out to collaborate with and/or train other stakeholders and interested parties who are playing a helping role in the life of the child and family.

High-Impact & Customized Documentation

• Generate easy-to-follow, user-friendly guidelines and recommendations (language and expectations need to be concise, unambiguous, and tailored to meet the unique needs and capabilities of the receiving party).

• Create strongly articulated documents for advocacy purposes, appeals, and to prompt action.

• Spell out the gravity of the concerns, perceived benefits/drawbacks of different courses of action, risks of inaction, and clearly define the scope and severity of the concerns (recipients need to “connect the dots” and “see the big picture”).

• Use formal correspondence, explicitly clear headings, and multiple signatures where applicable to strengthen advocacy efforts.

Accountability, Troubleshooting, & Outcome Durability

• Clearly define interventions and accountability to minimize any confusion or gaps in the services planned and the people responsible.

• Identify anticipated benefits, complications, and specific contingencies should problems occur.

• Follow-up frequently to verify that plans are on track, prevent or manage any emerging difficulties and to recommend corrective actions as needed.

Leadership, Staff Training, & Program Development

• Use formal and informal staff training methods (modeling, mentoring, research reviews, family presentations, etc.) to enhance staff responsiveness to service recipients and critical support systems.

• Promote a flexible program design that devotes staff time and resources to learn more about serving people in poverty and those from diverse backgrounds.

• Create a welcoming, secure, and accepting program culture that encourages honest dialogue, critical self-reflection, teamwork, renewal of staff energy, and the routine asking of tough questions (internally and externally).

• Address the challenges of poverty and brain injury in professional training curricula, research activities, conference presentations, and program improvement initiatives.

for serving individuals with ABI (Brown and Gordon, 2004).

Final Thoughts

When we consider the key ingredients needed to effectively serve the many children who are among the most disadvantaged the implications are inescapable. Children with ABI and their families who live in poverty need expanded, customized, ongoing, and efficacious supports. This includes access to staff who do not carry deficit perspectives about the capabilities of people in poverty (Sanders, 2013) or who have a negative bias about the meaning and presence of a disability. Given the ever increasing diversity within our society practitioners must also continuously explore cultural perspectives, factors influencing personal identity, family strengths, and community assets (Arango-Lasprilla & Kreutzer, 2010; Pitt, Romero-Ramirez, Lewis, & Boston, 2010).

Furthermore, children in the most disadvantaged circumstances require more than legal protections, treatment plans, educational goals, basic goods, and sound advice. They need equal opportunities and the necessary resources mobilized to help them arrive at a favorable outcome given their unique needs, desires, preferences, values, and capabilities.

Failure within our society to offer this level of assistance is

unfair and inequitable at best when compared to those who take on the challenge of brain injury with sufficient resources. It’s also a grave injustice to so many children who do everything that is asked of them post-onset – surgeries, new educational placements, coping with the loss of peer contact, managing pain, putting up with restrictions, engaging in therapies, modifying preinjury goals and aspirations, and finding the strength to believe in themselves and their future, to name a few.

The vast majority of children and families do everything within their power and means to get ahead. They put their trust and faith in professionals and others to help them move beyond what is likely to be one of their greatest moments of need. And although there are known approaches and positive interventions that can contribute to making their hopes and dreams a reality, more needs to be done to develop stronger collaborative partnerships that can help circumvent environmentally imposed restrictions and limitations (Ramkumar & Elliott, 2010). This is especially true if each and every person with a brain injury, regardless of age, income, race, gender, family composition, severity of injury, place of residence, and the like, are going to have a fighting chance to reach their full potential.

In many respects these are our 21st century health care, educational, community development, policy, and human service challenges. Fortunately, there are many highly talented neurorehabilitation and educational practitioners, among other influential and caring parties, that have the insight, wisdom, compassion, skills, and drive to take the actions necessary to truly make a difference.

References

Acker, M.B. (1990). A review of the ecological validity of neuropsychological tests. In D.E. Tupper & K.D. Cicerone (Eds.), The neuropsychology of everyday life: Assessment and basic competencies (pp.

19-55). Boston: Kluwer Academic Publishers.

Arango-Lasprilla, J.C., & Kreutzer, J.S. (2010). Racial and ethnic disparities in functional, psychosocial, and neurobehavioral outcomes after brain injury. Journal of Head Trauma Rehabilitation, 25(2), 128-136.

Brown M., & Gordon W.A. (2004). Empowerment in measurement: “muscle,” “voice,” and subjective quality of life as a gold standard. Archives of Physical Medicine and Rehabilitation, 85(Suppl.

2), 13-20.

Durgin, C.J. (2000). Increasing community participation after brain injury: Strategies for identifying and reducing the risks. Journal of Head Trauma Rehabilitation, 15(6), 1195-1207.

Durgin C.J., Gioia G.A., & colleagues (2010). Consulting to support children and youth with acquired brain injuries: Ten principles for consideration. Journal of Behavioral and Neuroscience Research, 8(1), 49-59.

Gerstenbrand, F., & Binder H. (2006). Neurorehabilitation and the epoch of globalization. Abstracts of the 4th World Congress for Neurorehabilitation. Neurorehabilitation and Neural Repair, 20, 88.

Pitt, J.S., Romero-Ramirez, M., Lewis, P.H., & Boston, Q. (2010). Triple threat of disability, race, and poverty: Considerations for rehabilitation practice and research. Journal of Minority Disability Research and Practice, 1(3), 7-29.

Ramkumar, N.A., & Elliott, T.R. (2010). Family caregiving of persons following neuortrauma: Issues in research, service, and policy. NeuroRehabilitation, 27(1), 105-112.

Sanders, M. (2013). Poverty, families, and schools. In V. Thompson (Ed.), Urban ills: Confronting Twenty First Century dilemmas of urban living in global contexts. Lanham, MD: Lexington Books.

Yeo R., & Moore K. (2003). Including disabled people in poverty reduction work: “Nothing about us, without us.” World Development, 31(3), 571–590.

About the Author

Charles J. Durgin, MS, MSEd, works at the Kennedy Krieger Institute and is an adjunct professor at the Graduate School of Education and Human Development at George Washington University. He has directed three neurorehabilitation centers, consulted with over sixty human service programs, co-edited the book Staff Development and Clinical Intervention in Brain Injury Rehabilitation, and provided staff training to help repatriate Canadian citizens with brain injury who were being served in the United States. He has graduate degrees in education from the State University of New York at Albany and Johns Hopkins University. Email: durgin@kennedykrieger.org.

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Getting to Work: The Challenges Associated With Race, Poverty, and Acquired Brain Injury Charles Dillard, MD, Paul Wehman, PhD, Karine S. Nersessova, BS, Michael West, PhD, and Pamela Sherron Targett, MEd

Poverty, Disability, and Race

Americans with disabilities face challenges that lead to a higher likelihood than non-disabled people of experiencing poverty (Groce & Bakhshi, 2011; Hughes & Avoke, 2010). In 2011, the overall poverty rate for individuals with disabilities aged 18 to 64 was 28.8%, compared to 12.5% for those without a disability (DeNavas et al., 2012). Brault (2012) reported that adults with severe disabilities are two times as likely to experience persistent poverty over a two-year period compared to adults with nonsevere disabilities.

Poverty and disability have been found to be closely related (Hughes & Avoke, 2010; Emerson, 2007; Fremstad, 2009).

Disability can create and exacerbate poverty through financial strain, inequality and exclusion. Poverty in turn can increase the likelihood of having a disability or exacerbate an existing one due to lack of access to basic needs (Groce & Bakhshi, 2011; Lustig & Strauser, 2007). In the US, about two-thirds of adults living in long-term poverty have at least one disability (Fremstad, 2009). In 2010, less than half of individuals aged 21 to 64 with a disability were employed (41.1%), compared to 79.1% of adults without a disability (Brault, 2012). Only 27.5% of adults with severe disabilities were employed, compared to 71.2% of adults with non-severe disabilities.

Individuals with disabilities often have greater needs and may require a higher income to achieve a level of well-being similar to non-disabled people (Groce & Bakhshi, 2011; Palmer, 2011).

Disability creates barriers which make it difficult for people to earn a sufficient income (Hughes & Avoke, 2010) such as restricted opportunities and resources, institutional and environmental hurdles, less education, and lower wages and employability (Brault, 2012; Emerson, 2007; Hughes & Avoke, 2010). These limitations make it more unlikely for people with disabilities to escape poverty (Fremstad, 2009; Parish, Rose & Andrew, 2010).

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Johnstone, Mount, and Schopp (2003) found that many persons with acquired brain injuries (ABI) experience unemployment and financial hardship, especially during the first year post-injury.

They report wage losses of $642 million and $353 million increases in public assistance during the first year after ABI. Many individuals with ABI live below poverty level, making it difficult for them to support themselves and their families. Health care costs may increase because of the additional medical and therapeutic attention they may need (Johnstone et al., 2003).

The effects of race and ethnicity on employment outcomes following ABI have been examined. Kreutzer and colleagues (2003) reported that non-minority group members had a higher likelihood of stable employment four years post-injury. ArangoLasprilla and colleagues (2009) found that when adjusting for pre-injury employment status and demographic factors, minority groups were more than three times as likely to be unemployed than stably employed. Gary et al. (2009) reported that African Americans are at a greater risk of short-term and long-term unemployment when controlling for pre-injury employment status, demographic factors, and clinical outcomes.

The remainder of this paper will address return to work (RTW) following ABI. First, barriers and challenges to RTW will be addressed, followed by strategies and interventions for achieving RTW. Finally, we will address the role of medical management in achieving RTW.

Barriers to RTW for Individuals with ABI Shames and colleagues (2007) conducted a comprehensive review of the literature regarding factors associated with successful RTW following ABI and current rehabilitation strategies. They note that prediction of RTW is a complex interaction of variables, including pre-morbid factors (i.e., age, education, employment history), injury-related factors (type, severity, location),

post-injury impairments, and personal and environmental factors (marital status, alternative income sources, social support).

Because of this complexity and the unique characteristics of each ABI patient, prediction of RTW for any individual is not feasible. They note that the literature includes numerous examples of high risk patients who did achieve successful RTW when given sufficient rehabilitation and support.

Research cited by Shames et al. (2007) has generally found that the weight of evidence indicates these factors frequently contribute to poor employment outcomes: • More severe injury (Trexler et al., 2010; Wagner et al., 2002); • Higher age at injury (Keyser-Marcus et al., 2002; Kreutzer et al., 2003); • Lower levels of pre-injury education and/or occupation (Hart et al., 2005; Walker et al., 2006); • Less social support from friends, family, neighbors, church, and others (Yasuda et al., 2001); • Significant physical, psychosocial, or cognitive impairments (Keyser-Marcus et al., 2002; McCrimmon & Oddy, 2006; Walker et al., 2006); • Member of a minority group (Arango-Lasprilla et al., 2009; Kreutzer et al., 2003); and • A history of substance abuse (Bogner et al., 2001; Wagner et al., 2002).

This list is far from exhaustive. However, it illustrates the complex nature of RTW and the difficulty in applying a prediction model to individual cases. In addition, the research literature is international, which brings into consideration differences across economies, cultures, health care, rehabilitation systems, and disability policies.

One employment barrier that is frequently seen across disability groups is fear of losing disability benefits, including cash benefits and health care (Burkhauser & Daly, 2002). The rules and regulations of Social Security Administration (SSA) disability programs, as well as many private disability insurance programs, often discourage beneficiaries from working. For three decades, Congress and the Social Security Administration have encouraged SSA disability beneficiaries to attempt to enter the workforce or increase their work participation through work incentives. SSA has also established a network of Benefits Planning, Assistance, and Outreach (BPAO) programs (later renamed Work Incentives, Planning, and Assistance, or WIPA) to help beneficiaries better understand the impact of earnings on their benefits and work incentives.

Employment Interventions for Individuals with ABI Improvements in how we support individuals with disabilities in gaining and maintaining employment have opened doors for many individuals with ABI. This includes a refinement of individualized Supported Employment (SE) services and the addition of Customized Employment (CE) to the vocational rehabilitation services repertoire. Each of these approaches offer an array of strategies that expand employment options for individuals with ABI, and especially those who might otherwise be perceived as either unable or not ready to work. Too often such impressions are incorrect and can have a devastating impact on the person who may be directed to forego employment or settle for restrictive, non-integration options.

One way to promote positive perceptions about a person with a disability’s ability to work is to increase knowledge about what

is possible and what resources and supports could potentially be available. This section will briefly review supported employment and customized employment. This will be followed by a discussion on incentivizing return to work.

Employment Services When it comes to employment services, one size does not fit all.

While some individuals with ABI may need relatively minimal but targeted intervention, others will need much more. The sophistication of the employment service will depend on the complexity of situation including the person’s abilities, potential support needs and more.

Supported Employment. SE is defined in the Rehabilitation Act Amendments which establish and fund the National Vocational Rehabilitation (VR) program. The core definition states SE is competitive employment in an integrated setting with ongoing support services for individuals with the most significant disabilities.

On-going support services are presented in two phases. In the first phase, VR counselors use federal and state funding to secure SE services from an employment specialist (ES), who provides or facilitates an array of ongoing support services. During the first phase, services are often intense and focus on assisting the person with obtaining work and stabilizing in employment by providing and facilitating work supports. The second phase or extended services are funded by a source other than VR and focus on the employee’s job retention and job mobility over time.

It is important to note that throughout both stages the role of the ES will depend on an ongoing assessment of individual support needs. It is not unusual for an individual to require an intensive amount of on the job training and support when first employed; thus, the ES may be present on the job up to 100% of the hours of employment for weeks to months. As the employee becomes more proficient, the ES fades assistance.

For decades, SE services have led to competitive employment for individuals with ABI (Wehman, Targett, West, & Kregel, 2005). Typically, for a person with a ABI who is pursuing new employment SE services include but are not limited to (1) developing a job based on the results of a functional community based assessment; (2) intensive on the job skills training which may include implementing systematic instruction, assistive technology, environmental modifications, rehab engineering and compensatory strategies; (3) facilitating communications and relationships at work to help support the employee; and (4) providing assessments of the employee’s work performance for the duration of employment to determine the need for ongoing support and then provide additional services as needed.

Customized Employment. The Federal Register defines Customized Employment (CE) as a blending of services and supports that may include --- job development or restructuring strategies that result in job responsibilities being customized and individually negotiated to fit the needs of individuals with a disability (Federal Register, June 26, 2002, Vol. 67, No. 123 pp.

43154-43149). Unlike SE, CE has no specific funding set aside for services. Frequently, services are funded by blending together a variety of monetary resources from a variety of agencies and programs. For example, a unique array of services and supports may be funded by VR, Medicaid Waiver dollars and Plans for Achieving Self Support (PASS) through the Social Security Administration, or Individualized Development Accounts at One Stop Career Centers.

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There are a number of strategies for customizing a job. In two common examples, a new job may be created or carved out for the individual with disabilities. A created job description is negotiated from an employer’s unmet needs in the work place. For example, a person sets up a business to deliver food to patrons who reside or work within a specific radius of the shop. This is advantageous to the business because it increases the business’s customer base and food and beverage sales. A carved job description results from a redistribution of exiting duties from one or more positions into one that is tailored to meet the unique abilities of the jobseeker.

Rather than have key staff spend time performing routine office tasks, a person is hired specifically to provide these functions. It should also be noted that both job creation and carving strategies are often used in supported employment as well.

Self-employment is another CE strategy. This may include a new business start up venture in the person’s home or community. Sometimes developing a business within an existing business is a viable option. As one example, a person sets up a small newsstand within an existing coffee shop, benefitting both businesses.

In a CE approach the level of support the person receives varies. For example, one individual may do many things on his own with some information and guidance, while another person may require personal representation to help him develop the work option and once employed provide or facilitate various time-limited work supports. In essence, the CE approach is for anyone, disabled or not, who requires help with obtaining employment.

SE and CE have a number of things in common including a team commitment to creative thinking and problem solving.

In addition to coming up with new, exciting and innovative approaches to make work a reality for an individual with ABI, SE and CE help make sure gaps in services and resources are viewed as issues to address rather than reasons not to move forward.

The Role of Medical Management in RTW Once an individual with ABI has made significant progress in their recovery after injury, he or she may be eager to transition back into the community and work. However, symptoms of their injury may persist long after returning home. These symptoms often include physical, cognitive and emotional deficits.

The management of these symptoms is essential for community reintegration and successful RTW. Physical symptoms that may persist after injury can include pain, fatigue, headache, and dizziness. It must be remembered that brain injuries do not always occur in isolation; concurrent injuries to other limbs and body systems are very common with the trauma sustained and can affect outcome (Wagner, Arenth, Kwasnica, & Rogers, 2011). These symptoms can be addressed via pain medications but also through physical therapy and modalities like heat and cold, TENS units, and ultrasound.

Cognitive deficits after an injury can include difficulties with memory, concentration, attention, and executive functioning (Wagner et al., 2011). These may not only be the most difficult to treat but also the most troublesome with RTW. Because brain injuries are often not outwardly visible, individuals with ABI may be expected to perform at pre-injury levels. Comprehensive neuropsychological testing can be vital in identifying patient’s cognitive strengths and weaknesses. This may help guide neurocognitive rehabilitation and help a patient decide whether returning to their previous level of employment is realistic.

While there is limited evidence available that medications may improve cognition as a whole, certain aspects may be improved 14 BRAIN INJURY PROFESSIONAL

with neuro-stimulant medications (Cifu & Caruso, 2010). A recent evidence-based guideline recommended methylphenidate for improving cognition after ABI (Warden et al., 2006). Patients may benefit from ongoing neurocognitive rehabilitation as well as the use of external aids to bolster organization, like smart phones and personal digital assistants (Cifu & Caruso, 2010).

Emotional disturbances after injuries are often very common and include depression, sleep disturbances, and anxiety. Depression after ABI occurs with a prevalence as high as 77% (Kreutzer, Seel, & Gourley, 2001). Posttraumatic depression often responds to medications like selective serotonin reuptake inhibitors (SSRI’s) and tricyclic antidepressants (TCA’s) (Fann, Uomoto, & Katon, 2000). Posttraumatic stress disorder (PTSD) has gained recent attention in light of the combat and blast injuries from the conflicts in Iraq and Afghanistan (Wagner et al., 2011). PTSD can involve the re-experiencing of the injury, like flashbacks and nightmares, as well as hyperarousal and sleep disturbances.

Treatment includes SSRI’s and or TCA medications and importantly psychotherapy programs to include cognitive behavioral programs (Warden et al., 2006). Sleep disturbances can be addressed via medications like ambien or trazodone and focusing on sleep hygiene (limiting daytime stimulants and avoiding napping, staying on bedtime routine) (Cifu & Caruso, 2010).

Conclusion This paper has provided an overview of RTW challenges and models for individuals with ABI, and the need for ongoing medical management to facilitate RTW. While the challenges to RTW are many, recent advances in technology, the development of evidence-based practices, and SSA policy changes related to disability benefits are helping to facilitate the transition from poverty to productivity.

References

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Bogner, J.A., Corrigan, J.D., Mysiw, W.J., Clinchot, D., & Fugate, L. (2001). A comparison of substance abuse and violence in the prediction of long-term rehabilitation outcomes after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 82(5), 571-577.

Brault, M.W. (2012). Current population reports. Americans with Disabilities: 2010. Household economic studies. Washington, DC: U.S. Census Bureau.

Burkhauser, R.V., & Daly, M.C. (2002). Policy watch: US disability policy in a changing environment. The Journal of Economic Perspectives, 16(1), 213-224.

Cifu D.X., & Caruso, D. (2010). Traumatic Brain Injury. New York: Demos.

Dawson, D.R., Schwartz, M.L., Winocur, G., & Stuss, D.T. (2007). Return to productivity following traumatic brain injury: Cognitive, psychological, physical, spiritual, and environmental correlates. Disability & Rehabilitation, 29(4), 301-313.

DeNavas-Walt, C., Proctor, B., & Smith, J. (2012). Income, poverty, and health insurance coverage in the United States: 2011.Washington, DC: U.S. Census Bureau.

Emerson, E. (2007). Poverty and people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 107-113.

Fann, J.R., Uomoto, J.M., & Katon, W. (2000). Sertraline in the treatment of major depression following mild traumatic brain injury. Journal of Neuropsychiatry and Clinical Neuroscience,12, 226-232.

Fremstad, S. (2009). Half in ten: Why taking disability into account is essential to reducing poverty and expanding economic inclusion. Washington, DC: Center for Economic and Policy Research.

Gary, K.W., Arango-Lasprilla, J.C., Ketchum, J.M., Kreutzer, J.S., Copolillo, A., Novack, T.A., & Jha, A. (2009). Racial differences in employment outcome after traumatic brain injury at 1, 2, and 5 years postinjury. Archives of Physical Medicine and Rehabilitation, 90(10), 1699-1707.

Groce, N.E., & Bakhshi, P. (2011). Illiteracy among adults with disabilities in the developing world: A review of the literature and a call for action. International Journal of Inclusive Education, 15(10), 1153-1168.

Hart, T., Whyte, J., Polansky, M., Kersey-Matusiak, G., & Fidler-Sheppard, R. (2005). Community outcomes following traumatic brain injury: Impact of race and preinjury status. Journal of Head Trauma Rehabilitation, 20(2), 158-172.

Hughes, C., & Avoke, S.K. (2010). The elephant in the room: Poverty, disability, and employment.

Research and Practice for Persons with Severe Disabilities, 35, 5–14.

Johnstone, B., Mount, D., & Schopp, L.H. (2003). Financial and vocational outcomes 1 year after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 84(2), 238-241.

Keyser-Marcus, L.A., Bricout, J.C., Wehman, P., Campbell, L.R., Cifu, D.X., Englander, J., & Zafonte, R.D. (2002). Acute predictors of return to employment after traumatic brain injury: A longitudinal follow-up. Archives of Physical Medicine and Rehabilitation, 83(5), 635-641.

Kreutzer, J.S., Marwitz, J.H., Walker, W., Sander, A., Sherer, M., Bogner, J., Fraser R.T. & Bushnik, T. (2003). Moderating factors in return to work and job stability after traumatic brain injury.

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Kreutzer, J.S., Seel, R.T., & Gourley, E. (2001). The prevalence and symptom rates of depression after traumatic brain injury: A comprehensive examination. Brain Injury, 15, 563-576.

Lustig, D.C., & Strauser, D.R. (2007). Causal relationships between poverty and disability. Rehabilitation Counseling Bulletin, 50(4), 194-202.

McCrimmon, S., & Oddy, M. (2006). Return to work following moderate-to-severe traumatic brain injury. Brain Injury, 20(10), 1037-1046.

Palmer M. (2011). Disability and poverty: A conceptual review. Journal of Disability Policy Studies, 21, 210–218.

Parish, S.L., Rose, R.A., & Andrews, M.E. (2010). TANF’s impact on low-income mothers raising children with disabilities. Exceptional Children, 76(2), 234-253.

Shames, J., Treger, I., Ring, H., & Giaquinto, S. (2007). Return to work following traumatic brain injury: Trends and challenges. Disability & Rehabilitation, 29(17), 1387-1395.

Trexler, L.E., Trexler, L.C., Malec, J.F., Klyce, D., & Parrott, D. (2010). Prospective randomized controlled trial of resource facilitation on community participation and vocational outcome following brain injury. Journal of Head Trauma Rehabilitation, 25(6), 440-446.

Wagner, K.A., Arenth, P.M., Kwasnica, C., & Rogers, E.H. (2011). Traumatic brain injury. In R.L. Braddom, L. Chan, M.A. Harrast, K.J., Kowalske, D.J. Matthews, K.T. Ragnarsson, & K.A. Stolp (Eds.), Physical Medicine and Rehabilitation (pp. 1133-1175). Philadelphia: Elsevier Saunders.

Wagner, A.K., Hammond, F.M., Sasser, H.C., & Wiercisiewski, D. (2002). Return to productive activity after traumatic brain injury: Relationship with measures of disability, handicap, and community integration. Archives of Physical Medicine and Rehabilitation, 83(1), 107-114.

Walker, W.C., Marwitz, J.H., Kreutzer, J.S., Hart, T., & Novack, T.A. (2006). Occupational categories and return to work after traumatic brain injury: A multicenter study. Archives of Physical Medicine and Rehabilitation, 87(12), 1576-1582.

Warden, D.L,, Gordon, B., McAllister, T.W., Silver, J.M., Barth, J.T., Bruns, J., Drake, A., Gentry, T., Jagoda, A., Katz, D.I., Kraus, J., Labbate, L.A., Ryan, L.M., Sparling, M.B., Walters, B., Whyte, J., Zapata, A., & Zitnay, G. (2006). Guidelines for the pharmacologic treatment of neurobehavioral sequelae of traumatic brain injury. Journal of Neurotrauma, 23, 1468-1501.

Wehman, P., Targett, P., West, M., & Kregel, J. (2005). Productive work and employment for persons with traumatic brain injury: What have we learned after 20 years? Journal of Head Trauma Rehabilitation, 20, 115-127.

Yasuda, S., Wehman, P., Targett, P., Cifu, D., & West, M. (2001). Return to work for persons with traumatic brain injury. American Journal of Physical Medicine & Rehabilitation, 80, 852-864.

ABOUT THE AUTHORS

Charles M. Dillard, MD, is an Assistant Professor in the Department of PM&R at Virginia Commonwealth University and the Medical Director of the Pediatric Traumatic Brain Injury Program at the Children’s Hospital of Richmond at VCU. Paul Wehman, PhD, has served as the Director for the Rehabilitation Research and Training Center (VCU-RRTC) for over 30 years. He has been part of a group of professionals, researchers, and advocates dedicated to the hiring, advancement, and retention of individuals with significant disabilities in competitive employment. A Professor of Physical Medicine and Rehabilitation, he serves as Chairman of Rehabilitation Research with a joint appointment in the Departments of Special Education and Disability Policy and Rehabilitation Counseling.

Karine Nersessova, BS, completed her Bachelors of Science in Psychology at Virginia Commonwealth University. She has been a research assistant for 4 years and her interests include traumatic brain injury, PTSD and neuropsychology. She moved from Moscow, Russia at age 8 and has lived in Richmond, VA for 18 years. She is currently a Research Associate for the Traumatic Brain Injury Clinic at the Children’s Hospital of Richmond’s at VCU. Michael West, PhD, has been engaged in disability research at the VCURRTC for over 26 years. His areas of interest include supported and customized employment, transition from school to work, vocational rehabilitation following brain injury, disabled veterans, and public policy related to employment and disability benefits. Before coming to the VCU-RRTC, Dr. West was a special educator and director of vocational and residential services for individuals with cognitive and physical disabilities.

Pamela Sherron Targett, MEd, has worked in the field of disability and employment since 1986 and is currently the Director of Special Projects at the VCU- RRTC. Over the years, she has been involved in research and training and published a number of works related to the employment of individuals with traumatic brain injury, supported employment, and transition to work for youth with severe disabilities.

Corresponding Author: Paul Wehman, PhD, Virginia Commonwealth University, P.O. Box 842011, Richmond, VA 23284. Email: pwehman@ vcu.edu; 804-828-1852.

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16 BRAIN INJURY PROFESSIONAL

A Roadmap to a 21st-Century Disability Policy for People with Brain Injury and Other Disabilities

David R. Mann, PhD, David C. Stapleton, PhD, and Bonnie L. O’Day, PhD

Of the approximately 17.5 million working-age people in the United States who live with disabilities, including many with brain injury, nearly 70 percent receive benefits from public programs (Houtenville & Brucker, 2011). Despite increases over many decades in program participation and spending—$357 billion in fiscal year 2008, representing some 12 percent of all federal outlays (Livermore, Stapleton, & O’Toole, 2011)—the disability support infrastructure in the United States is failing many of those it was designed to help, and the economic independence of people with disabilities has eroded. Media stories continue to highlight significant gaps in services for people with brain injury acquired in the Iraq and Afghanistan conflicts and the impact lack of health and employment services can have on the lives of people with brain injury and their families. Although immediate fiscal pressures would be alleviated by tightening eligibility or reducing benefits for the largest support programs, including Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), Medicare, and Medicaid, failure to address the underlying structural issues will perpetuate program inefficiencies and poor outcomes and could negatively impact people with brain injury and other significant disabilities. This article is based upon an issue brief by Mann and Stapleton (Mann & Stapleton, 2012) and outlines an alternative approach to slowing expenditure growth while improving the economic status of Americans with disabilities.

What’s Wrong with Current Policy?

America’s disability policies are failing both taxpayers and the working-age population with disabilities. Even as program expenditures have risen, the economic status of this population has fallen even farther behind that of its non-disabled peers. Declining employment and household incomes among people with disabilities in recent decades have been accompanied by a sharp rise in applications for support, with the SSDI caseload almost tripling from 2.8 million in 1980 to 8.0 million in 2010.

Two fundamental structural flaws in current disability policy are primarily responsible for these failings. First, to receive any assistance through SSDI and SSI—the primary gateways 18 BRAIN INJURY PROFESSIONAL

to benefits—applicants must demonstrate an almost complete inability to work. This requirement fails to recognize that many people whose impairments limit their work capacity can still make significant contributions to their own financial support.

By making complete inability to work a criterion for support, these programs create work disincentives among applicants and beneficiaries, erode work capacity, foster long-term dependence, and increase poverty among the very people they are intended to help.

Second, as the Government Accountability Office (2005) documents, the patchwork of state and federal disability support programs creates pervasive inefficiencies, including overlaps and gaps in services, misaligned incentives, and conflicting objectives. Support fragmentation also hinders substantive reform because the best opportunities to innovate cut across agency lines and levels of government. Conflicting priorities, jurisdictions, and objectives create disincentives for agencies to work together, resulting in little overall progress.

Programmatic Reforms

The programmatic reforms and structural changes Mann and Stapleton propose are intended to consolidate the administration of support at the state or local level, provide important but limited federal oversight, expect and empower people with sufficient work capacity to support themselves at least partly through work, and protect and strengthen supports for those with insufficient work capacity.

Under these reforms, responsibility for all eligibility determinations and support delivery would be consolidated under new entities called disability support administrators (DSAs), which would operate at the state or substate level but receive both federal and state funding. Every DSA would have the same responsibilities but potentially different organizational structures. A DSA could be run by the state or local government, a private organization, or a coalition of multiple entities.

To ensure timely, coordinated support delivery, a single case manager would be responsible for each beneficiary’s case and serve as his or her primary point of contact. The federal govern-

ment would oversee the DSAs by establishing national eligibility criteria, adjudicating appeals, monitoring and reporting key outcomes, and encouraging continual program innovation.

The success of the reformed system would depend, in part, on receiving timely feedback from the beneficiary population.

To facilitate communication and oversight, we propose the creation of consumer boards. A national board would ensure that the federal government vigorously exercises its oversight responsibilities, while DSA boards would share consumer feedback and monitor programmatic efforts.

The national eligibility criteria applied by DSAs would focus on potential work capacity rather than on the chronic inability to work. Each applicant’s potential work capacity would be measured as part of eligibility determination. Those truly unable to work would receive an income benefit as well as other supports, while those with unrealized work capacity would be eligible for work supports and training. With inability to work no longer a criterion for eligibility, workers would be able to apply for benefits while remaining in the labor force.

We envision DSAs assigning each successful applicant to one of three categories: •

•

•

Retiree with impairments. These beneficiaries would comprise older workers (at least age 50) who meet the current nonmedical SSDI eligibility criteria and are determined to have minimal or no work capacity. Benefits for retirees with impairments would not change relative to current law. They would become eligible for SSDI and, eventually, Medicare, as under current law. Thus, the reforms would be consistent with the intent of the SSDI program when it was introduced in 1956, preserving current benefits for workers who experience the onset of work-ending impairments at an older age (Berkowitz, 1987).

Person with low work capacity. These beneficiaries would qualify for income and in-kind benefits at least as generous as those currently available. Although not expected to, they could earn a generous amount without risking benefit loss and would have the option of obtaining some work-support services. Efficiency gained by support integration could help improve quality of life and reduce spending growth for this group.

Worker with disabilities. Most dramatically affected by the reforms would be individuals considered to be workers with disabilities. Because they would be determined to have significant potential work capacity, these beneficiaries would, with appropriate supports and assistance, be expected to contribute to their own financial support through work. Benefits for workers with disabilities and people with low work capacity would be customized to their individual needs. Many people with brain injury would fall into these two categories and could obtain the supports they need to pursue employment including supported or customized employment often critical for people with severe brain injuries to work (See article

by Dillard and his colleagues in this issue.) Unemployed workers with disabilities would need to demonstrate good-faith employment efforts to continue receiving benefits.

Workers with disabilities would each receive a customized

package of supports through his or her DSA, covering a continuum of supports and including one, some, or all of the following: a disability allowance; self-sufficiency counseling services; an earned income tax credit; subsidies for disability services, equipment, and accommodations; and employment services.

If awarded, the disability allowance would be designed to partially defray disability-related costs, such as special transportation accommodations. Supports could also include therapy and counseling to enable the individual to develop daily living and employment skills, as well as supported or customized employment. This model could be particularly attractive to people with brain injury, who need flexible services that take into account the severity and type of injury and the services required to integrate back into the workforce. The duration of all supports would be determined by the beneficiary’s medical condition, potential work capacity, and employment effort.

The reforms would create savings—suggested by historical data to be on the order of tens of billions of dollars annually—by increasing the lifetime earnings of and tax payments by those with work capacity, reducing their reliance on government support, and integrating programs. It will be important to proceed with caution, however, because striking a balance between improving supports and reducing expenditure growth will be challenging.

Under the reformed system, most beneficiaries would receive basic health care coverage from the same sources as other Americans. The Affordable Care Act would require those eligible for employer-based health insurance to enroll; all others would buy coverage through their state’s health insurance exchange or, if their household income is below 133 percent of the federal poverty level, would receive it from Medicaid.

Retirees with impairments would qualify for Medicare under current SSDI program rules.

Financial Reforms

As the programmatic reforms deal with much of the structural fragmentation and inefficiency responsible for rapid expenditure growth, they will need to be supported by financial reforms that ensure adequate funding and the alignment of financial incentives with programmatic goals. The financial reforms described below are intended to ensure adequate funding, encourage efficient decisions, contain growth in federal and state expenditures, make federal expenditures responsive to external factors such as the business cycle, and avoid precipitous declines in support.

As under current law, federal funding sources would be a mixture of payroll taxes and general revenues. Funding would not be open-ended, however. Rather, federal expenditures would remain under a threshold determined by Congress to be consistent with national fiscal objectives. Each DSA’s federal funding allocation would be based on its catchment area’s current funding levels, projected needs, payroll tax revenues, and ability to pay. Federal funding would be adjusted as DSA catchment areas change demographically and beneficiaries migrate across areas.

The sensitivity of the demand for services to the business cycle would also make it important for the funding mechanism to increase funding during economic downturns and decrease it during rapid expansions.

Each DSA’s share of federal funding would be allocated in two steps. The Social Security Administration (SSA) and the Centers for Medicare & Medicaid Services (CMS) would first BRAIN INJURY PROFESSIONAL

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directly pay all proposed income benefits and Medicare costs, respectively, for eligible beneficiaries in the DSA’s catchment area.

The remaining federal funds would then be granted to the DSA, which would combine them with state funding to finance all other supports.

This two-step federal funding system has two merits. First, with all income and Medicare payments excluded from grants, DSAs would have incentive to determine SSDI awards and other income supports responsibly. The more income support and SSDI allowances a DSA makes, the less money it would have to finance all other supports, and vice versa. Second, use of an existing national payment system with state contributions would prevent costly duplication and support federal monitoring of cash payments. Requirements for maintaining state funding levels would change gradually, as circumstances warranted.

Each state’s minimum funding requirement would eventually be a percentage of federal grants to the DSAs in the state. Federal matching grants and block grants to states, which comprise 22 percent and one percent of current funding, respectively, would be eliminated in favor of grants to DSAs. States would initially provide the same level of funding under the reformed policy as they do under current law.

to promote positive outcomes; and encourage federal agencies, states, localities, and private organizations to innovate in positive ways. We suggest the process start by passing enabling federal legislation that creates a reform management structure, a financial accounting process, and a waiver process for testing reform ideas. The management structure would include, among other consumer safeguards, an independent consumer review board system that would allow the community of people with disabilities to influence the reform process. The financial accounting process would create rolling ten year budget projections that set targets for controlling expenditure growth. The waiver process would provide the authority to test promising ideas such as those described in this brief.

Without these changes, current programs may be cut in ways that attempt to minimize harm but will likely lead to severe consequences. Policymakers should instead consider instituting an evidence-based structural reform process to improve performance and reduce costs in the long term, while affording more protection to current programs in the short term than would otherwise be possible.

The Policy Transition

References

The reforms we describe require major structural changes to the nation’s disability support system. Although they can potentially benefit both people with disabilities and U.S. taxpayers, a policy transition that is too quick and not based on solid evidence could do more harm than good.

The first step in a successful transition to a new disability policy must be a substantial demonstration period—perhaps 10 years or longer—during which to build the evidence base and policy consensus needed to move forward. During this time, federal and state agencies, municipalities, counties, and various private organizations would initiate numerous pilot projects.

Interventions and policies discovered to be effective and viable would be incorporated into the new policy.

The federal legislation needed to initiate such a demonstration period must authorize and encourage pilot projects, define demonstration objectives and requirements, guarantee the cooperation of pertinent agencies, and create a national disability demonstration commission. The commission would encourage government agencies and other organizations to plan and conduct demonstrations, ensure that risks to people who participate in demonstrations are minimized, and foster a spirit of innovation and learning.

The nation’s long-term fiscal problems are creating an urgent need for structural reform to programs that support working-age people with disabilities. Expenditures for these programs account for a large share of the federal budget and will almost inevitably have to be reduced. We have outlined a set of structural changes that can both improve economic outcomes for those with disabilities and reduce growth in government spending for their support. A demonstration period could provide the time and evidence needed to specify and test the reforms fully.

Whether this proposal or other systemic reforms are pursued, a transition plan will be needed to build a bridge from the current system to a new policy. The reform transition period could be guided by three principles: build trust within the disability community for reform; use financial pressure 20 BRAIN INJURY PROFESSIONAL

Berkowitz, E.D. (1987). Disabled policy: America’s programs for the handicapped. New York: Cambridge University Press.

Government Accountability Office. (2005). Federal disability assistance: Wide array of programs needs to be examined in light of 21st century challenges (GAO-05-626). Washington, DC. Houtenville, A.J., & Brucker, D. (2011). Safety net programs for working-age persons with disabilities.

Presented at the June 8, 2011, Policy Forum of the Center for Studying Disability Policy, Mathematica Policy Research. Durham, NH: University of New Hampshire.

Livermore, G.A., Stapleton, D.C., & O’Toole, M. (2011). Health care costs are a key driver of growth in federal and state assistance to working-age people with disabilities. Health Affairs, 30(9), 1664–1672.

Mann D.R., & Stapleton, D.C. (2011). Fiscal austerity and the transition to 21st century disability policy: A roadmap. Washington D.C., Mathematica Policy Research.

For more information contact: David R. Mann, dmann@mathematica-mpr.com.

This research was sponsored by the University of New Hampshire’s Rehabilitation, Research, and Training Center on Employment Policy and Measurement, funded by the U.S. Department of Education (ED), National Institute on Disability and Rehabilitation Research (cooperative agreement no. H133B100030). The contents of this brief do not necessarily represent the policies of ED or any other federal agency (Edgar, 75.620 [b]). The authors are solely responsible for all views expressed.

about the authors

David R. Mann, PhD, is a researcher at Mathematica and affiliate of the Center for Studying Disability Policy. Dr. Mann’s work on disability reform is part of a broader interest in empirical research on the labor force participation, human capital accumulation, and benefit receipt of youth and adults with disabilities. He has participated in projects for several Social Security Administration employment initiatives for people with disabilities. Dr. Mann has also led several statistical analyses examining the education, employment, and earnings outcomes of young adults with childhood onset disabilities. He holds a PhD in economics from the University of Pennsylvania.

David C. Stapleton, PhD, is a senior fellow and the Director of the Center for Studying Disability Policy at Mathematica Policy Research. The mission of the Center is to inform a wide range of efforts to update disability policy. His research focuses on the impacts of public policy on the employment and income of people with disabilities. He earned a PhD in economics from the University of Wisconsin, Madison in 1978.

Bonnie L. O’Day, PhD, a Senior Researcher at Mathematica Policy Research, has extensive experience conducting research and providing intellectual leadership to research and evaluation studies on disability, health care, employment, and independent living. Dr. O’Day plays leadership roles on several projects to implement and evaluate programs to assist transition-age youth and adults with disabilities to become employed, such as the Youth Transition Demonstration and the Benefit Offset National Demonstration projects. She obtained her PhD from Brandeis University in 1997.

“Our goal is to provide the highest quality, individualized transitional and long term care for persons with acquired brain injury.”

Nathan D. Zasler, MD Founder, CEO & Medical Director Tree of Life Services, Inc.

Chief Editor Nathan D. Zasler, MD

www.Tree-of-Life.com 1-888-886-5462 • Fax 804-346-1956 Administrative Offices BRAIN INJURY PROFESSIONAL 21 3721 Westerre Parkway, Suite B • Richmond, Virginia 23233

Poverty, Disability, and Social Justice: A Discussion with John A. Lancaster

CHARLES J. DURGIN, MS, MSEd, ANASTASIA B. EDMONSTON, MS, CRC, JESSICA GRUBBS, MSEd, AND KACHERA JONES

John A. Lancaster became a Board Member of the United States Institute of Peace in June of 2011 following his nomination by President Barak Obama. He is retired as the executive director of the National Council on Independent Living (NCIL), the oldest disability grassroots organization run by and for people with disabilities. Currently, Lancaster serves as the treasurer of the board of trustees for Handicap International Federation (HI) and serves on the board of directors of Handicap International, USA. He also serves as a board member of the United States International Council on Disabilities (USICD) as past president, the World Institute on Disability, as well as the Global Universal Design Commission. He served in the federal government as executive director on the President’s Committee on Employment of People with Disabilities from 1995-2000, and had been a member of that committee since 1991. From 1981-1987, Lancaster was the director of the office for individuals with disabilities for Governor Harry Hughes of Maryland.

Lancaster received his juris doctor and bachelor’s degree from the University of Notre Dame.

As a second lieutenant in the United States Marine Corps, Lancaster commanded an infantry platoon in combat during the Vietnam War, earning a Purple Heart and Bronze Star. It was that injury, wartime experiences, and subsequent return to the United States that led him to become a lifelong disability and social justice advocate. In the 1990’s he returned to Vietnam and provided extensive guidance and consultation on disability law and policy to businesses, NGO’s, and the Vietnamese government.

In October of 2013 Mr. Lancaster spoke to Charles Durgin, Jessica Grubbs, and Kachera Jones (all from the Kennedy Krieger Institute) and Anastasia Edmonston (Maryland Department of Mental Hygiene). The purpose of this gathering was to have an open and honest discussion about poverty, disability, and human rights in this day in age. Kachera, a student at the KKI High School, posed a few questions that were more personal in nature and relate to her life circumstance. At the age of 17 she was stuck by a car and subsequently participated in over a year of intensive acute hospital care and neurorehabilitation. Her commitment to rehabilitation continues to this day both in school and as an outpatient. She is in her senior year and is in the final stages of earning her diploma.

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AE: What conditions or events within society do you think does the most to advance civil rights, support full inclusion, and create meaningful opportunities for people with disabilities?

Activism. Having people with disabilities themselves becoming assertive, demanding, organizing, and learning how to play the political game at whatever level of government that might be. At some point people with disabilities need to demand these things; and parents of people with disabilities as well. If you look historically at the tremendous progress that we have made in this country and in other countries around the world, it has happened in large part because people with disabilities themselves and parents of children with disabilities have been assertive.

This includes advancements such as inclusive education, having the chance to get employment, getting around in the community using public transportation, being able to vote, and to live free of an institution. All of these gains have occurred because the people most affected and those who care about them have taken responsibility to fight for those changes.

JG: How can educational professionals and neurorehabilitation practitioners have a significant impact on the service level when working with students with acquired disabilities who also face severe economic hardships?

The biggest thing is to work to help them gain self-confidence and to take initiative. Also, to make sure that they have to the fullest extent possible, the basic skills that they’re going to need to be ready to go on to higher education if that’s possible, and/or into job training and ultimately a job.

Teaching them how to be independent and to do as much as they can for themselves, and when it is something that he or she can’t do on their own, to learn how to ask for what they need. They should ultimately be the person in charge of directing whatever support or service it is that they need. I think these skills are essential for people with disabilities, for anybody really, to be successful.

AE: During your July 12, 2012 testimony before the Senate Foreign Relations Committee to support the ratification of the Convention on the Rights of Persons with Disabilities (CRPD), you stressed that you’re proud of this country, its laws, and our noble history of leadership.

Where do you think we are particularly strong and where

do we need to do better?

There are a number of areas where we are particularly strong.

For example, medical interventions after a very serious brain injury and for children who are born with significant disabilities. There are also tremendous rehabilitation facilities for veterans like myself who have been severely disabled in combat. There are few health care systems in the world that have been able to achieve the level of rehabilitation and treatment to get people beyond their physical, mental, and intellectual disabilities to the point that they can start participating in community life. I think that is the number one area where we have been particularly strong and rightfully should be proud of, that’s not to say that there isn’t more progress to be made.

Another area that we have made tremendous progress is in physical access to the built environment. I mean you see it all over our country - curb cuts, ramps into buildings, wider doorways, grab bars by toilets and bathtubs, showers, I could go on and on.

Also, with new technologies you can turn on a television now and you can click on a little button on the remote and you have closed caption on the screen. So medical care and rehabilitation, access to information and technology and major improvements in the built environment is where we are very strong. Very few counties in the world can measure up to this level of progress.

We have also made good progress in the area of employment.

We have created a great system of laws and programs that support people with disabilities in finding and getting into meaningful employment but the overall percentage of people with disabilities who remain unemployed is still troubling. So we still have a long way to go, that being said we have systems in place that many, many other countries just don’t have.

CD: Why is the CRPD treaty so important?

One great thing about the Convention on the Rights of Persons with Disabilities is that it gives a mandate and a goal to all the nations in the world who signed and ratified it to make sure people with disabilities have the right and opportunity to fully participate socially, economically and politically. It has many provisions, critics say too many, that prescribe the rights that any civilized nation ought to provide for all its citizens, such as the right to be free of unjust treatment, to have an inclusive education, healthcare, access to government services, job training, employment, economic and political access and so much more. Our country has much to offer other nations in implementing the CRPD. In essence, the Convention was modeled after our Americans with Disabilities Act. I trust our United States Senate will have the courage and wisdom to ratify it.

KJ: Mr. Lancaster, I understand that as a lieutenant you were shot in Vietnam in 1968 and when you returned home you were shocked to find so many distressing problems facing people with disabilities - physical barriers, ignorance, injustices, and more. Is that true? Have I missed anything?

No Kachera, that is very true. You have not missed anything.

When I got shot in Vietnam and came back there was virtually no access to much of anything. I was fortunate in that I had a very supportive family and friends and my disability was only physical in nature. A spinal cord injury due to a gunshot wound; so I’ve had to use a wheelchair since 1968. I quickly found that there were many, many, many doorways I couldn’t get through, there were hardly any hotels in the country that I could stay in, and I couldn’t use public transportation of any sort. I was able

to get back to school at my alma mater, the University of Notre Dame, to work on my law degree, yet most of the campus was totally inaccessible. I had to have friends haul me up the steps to get into the law school and up another set of stairs to use the law library. This made going to law school very difficult.

What was even worst was that when I finally graduated I couldn’t get an interview with anybody. In the few interviews I eventually got I would hear things like “We do not think you have the stamina to be a lawyer” - even though I just finished law school.

“We don’t know how you are going to navigate the law library?

The stacks are too close together for your wheelchair.” “How are you going to get into the county courthouse with all of its steps to do your work?” It was one thing after another. I finally got a job and it took a long time searching. The only place that would hire me was the Department of Veterans Affairs in Washington, DC. It wasn’t a bad job. It was a pretty good job. So it was quite a struggle.

Discrimination was in my face. I was experiencing discrimination both blatant and subtle in about every aspect of my life.

KJ: I can see why that made you angry and that you were not going to tolerate it. But what would you recommend to others who may not be as assertive or skilled at fighting for their rights?

Well it is true that I was a lawyer and I knew how to open my mouth and be assertive, but some people I know are not that way.

But they have to at least find it in themselves to speak their mind, articulate their needs, and identify the problem. The other thing I think people need to learn, and there are resources out there to assist, is that when they feel they are being treated unfairly in a way that violates the many, many laws that we now have in place to ensure the rights of people with disabilities, that they go to a disability rights organization and get help to advocate for their needs.

Those supports are out there, such as at the Independent Living Centers and the many disability-specific organizations that assist people with similar needs.

CD: How pervasive are the misconceptions about people with disabilities and how much of a role does that play for people to be able to get ahead in life?

I think it’s huge. Yet I think in our country we’ve made enormous progress in this area over the past 50 years. And I think the negative stereotypes, stigmas, and the misconceptions are slowly and gradually falling by the wayside for a variety of reasons.

One of the biggest being the much higher percentage and greater participation by people with disabilities themselves in all aspects of society, whether it’s public education or just being out and about using public transportation systems. This includes involvement in recreation of all sorts, and progress in terms of employment of people with disabilities, in addition to the whole process of deinstitutionalization.

Although our society is getting used to seeing people with disabilities engaged in community life there are still tremendous stereotypes about the capabilities of people with disabilities. For example, attitudes that young people with disabilities just need to be protected and taken care of and assisted instead of having a mindset of empowering the individual, or making sure that they get the supports, training, and education that they need. And then kind of giving them a little boot in the butt and saying get out there and stumble and fall and take your knocks like most people have to do and start participating. A lot of people don’t BRAIN INJURY PROFESSIONAL

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take that attitude. I know it’s natural to want to protect but when it’s overdone, that can really have a negative impact on the development of the young individual and their ability to ultimately live independently and take charge of their own lives and to be assertive when needed.

JG: What still bothers you and what areas would you like to see changed?

Employment. Employment. Employment. People with disabilities tend to be the poorest of the poor in this country. Even when they aren’t in poverty they tend to be earning less and often are unemployed and economically disadvantaged or depend on some form of government support. We have a lot of great systems in place to address the employment of people with disabilities but they are definitely not reaching everyone who will benefit. I’m not sure what all the answers are but this bothers me more than anything.

When people have a job they have the ability to take care of themselves better, if not completely. They have more resources, they feel better about themselves, they can take pride in contributing to whatever it is that their employer does, and they strengthen the economy as a whole. When individuals start to contribute and feel better about themselves it gives them the resources to move into other areas of life and to be happier and to more fully participate. So, I think overcoming this significant economic challenge in figuring how we can get the tremendously high number of unemployed people in this country into meaningful jobs is the biggest challenge and the thing that bothers me the most.

KJ: What gives you the greatest cause for optimism?

The tremendous associations I’ve had with individuals with disabilities from all around the world. I have seen exceptional people with disabilities work themselves out of incredibly debilitating situations caused by societal conflicts, family problems, environmental disasters, and prejudices. Seeing them overcome these problems and be fully participating in their communities and giving back to other people with disabilities gives me great cause for optimism. I would just like to see the pace of change picked up and to see more people with disabilities and others getting involved in the disability rights movement and empowering all people with disabilities to move their lives forward.

Postscript

After the interview all of the participants took a few minutes to step back and reflect on the discussion. We shared a variety of personal perspectives and reactions, in addition to discussing service, advocacy, systems development, and staff training issues specific to neurorehabilitation. If you would like a copy of this postscript, which includes additional photographs, commentary, and supporting materials please contact: Charles Durgin (durgin@kennedykrieger.org).

Acknowledgments

We sincerely thank John Lancaster for generously sharing his time and expertise with us. He clearly has many pulls on his time in “retirement” and his willingness to do this interview reflects his deep dedication to all people with disabilities and those who are committed to advancing civil rights and the effectiveness of human services. Special acknowledgments go to Anthony Scimonelli, Kara Miller, and Rebecca Linville for their assistance with this interview.

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supporting people struggling to just get by When brain injury and socioeconomic instability converge, regardless of which comes first, people often experience diminished resources which can adversely impact rehabilitation, stabilization, adaptation, and future progress. The degree of stability or instability that a person experiences is not only impacted by the brain injury, but is also influenced by the level of resources at their disposal. At Rocky Mountain Human Services (RMHS) Center for Technical Assistance and Training (CTAT) we strive to enhance service effectiveness by combining our knowledge of brain injury with our direct community-based experiences serving customers who are struggling to take care of their most basic needs (e.g., food, housing, transportation, childcare, employment).

We engage in community collective action by collaborating with organizations as well as employers. Significant time is given to employer education to make sure that proper accommodations are in place and that the needs of consumers are understood. Work supports also include developing customer skills to increase employability and providing assistance with navigating the complex systems that can support or interfere with this process.

Staff and community members profit from and require ongoing support to have a positive impact. We educate both staff and customers about the importance of relationship building and effectively developing individual resources. Training staff to form productive working relationships with customers who are experiencing the overwhelming challenges of managing survival activities and changing abilities is of utmost importance. Our philosophy of training emphasizes reflective problem solving, strategy development, as well as providing staff support to manage the demands of this type of work. Diversity training is used to help staff to better understand customers from significantly different backgrounds creating a clear focus on how staff and programs often need to change to effectively meet the needs of the people we serve. The strategic use of motivational interviewing is also emphasized to understand customer perspectives and to ensure ownership in the service plan.

Above all else we emphasize positive collaboration with our customers, staff, and others in the community. This allows us to utilize community strengths, cultivate individualized resources in partnership with those we serve, and to simultaneously build a community that is more accessible to people with brain injury. We see our customers as people who are working hard to solve their problems and our job is to partner with them rather than prescribe what we think is best.

Our focus is to work with their unique, perhaps new sets of abilities; and to work with their priorities and unique challenges in the many communities in which they live.

Debra Whitehead, Nancy Freeman, CBIST RMHS is a 501(c)3 nonprofit organization that serves nearly 10,000 individuals, including more than 2,000 professionals and 7,500 Coloradans. For more information visit: www.rmhumanservices.org

Restore-Ragland

Restore-Roswell

Restore-Lilburn

Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems.

Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

www.restorehealthgroup.com 800-437-7972 ext 8251

Ivy Street School in Brookline, MA

Comprehensive Residential and Day School (ages 13-22) Post-Secondary Transitional Program (ages 18-22)

Expertise in brain injury Individualized employment opportunities for students Focus on teaching self management and executive functioning skills Health, hygiene, and safety skills Relationship and social skills Family support www.ivystreetschool.org BRAIN INJURY PROFESSIONAL

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legal spotlight IS A PERSON WITH A TBI LEGALLY COMPETENT TO SETTLE A CLAIM? Under these circumstances, some of the factors to be conA settlement is a contractual agreement between two parties to sidered are: interactions with the person and their ability to follow resolve a dispute. When dealing with traumatic brain injuries, the conversation and rationally interact with others; opinions from settlements normally arise when the injured person makes a claim other sources such as family members and friends and; assessagainst the responsible party, and the claim resolves in a money ments and views from medical personnel, rehabilitation team and/ settlement. Unfortunately, people who have suffered a moderate or social workers. Notwithstanding, in order to legally enter into a to severe traumatic brain injury often experience social, emotional settlement agreement, an individual must understand the nature and cognitive deficits to differing degrees. So the question arises, and quality of the transaction along with its significance and conis a person with a TBI legally competent to settle a claim? sequences.

The term competency itself can be a bit confusing. In common Because these factors are clearly open to interpretation, when usage the term “competent” can mean somebody who is reliable a settlement agreement is entered or dependable, and in a professional ...just because somebody has a TBI does not mean into by an individual whose compesetting, somebody who is competent has the professional skills to handle that they are incapacitated, and in most instances, tency is questionable, that contract, a particular matter. However, from a are perfectly capable and competent to enter into a though valid, is vulnerable to a legal challenge. In other words, because legal standpoint, competency deals settlement agreement. the individual’s competency is queswith an individual’s mental capactionable, a court could review the circumstances surrounding the ity to make decisions that involve their interests. To be considcontract, including the competency of the individual, and make a ered competent somebody must be of sound mind and mentally determination that the contract is ultimately void. capable of exercising their liberty and pursue their own interests.

When all is said and done, a person with a TBI may be comLegally, certain individuals are exempt from entering into contracts, petent to settle a claim. However, if their competency is in doubt, which include infants, minors, people who are mentally insane, or the settlement is susceptible to being challenged and the contract people who are under the influence of drugs. may ultimately be void. Thus, persons with TBI and their families Florida courts use the term “incapacitated”, and competency should consult with a legal team that is experienced in handling is assumed unless there is a reason to declare a person incapacitraumatic brain injury cases. tated. Courts make these determinations in guardianship proceedings and generally are unwilling to declare a person incapacitated unless it is absolutely necessary. Among other requirements, About the Author Florida Courts determine incapacity by appointing a committee, Frank Toral is the Senior Partner of which includes physicians, to examine the individual, and file a Toral Garcia Battista, a Florida-based report. This high threshold is essential when you consider that law firm focusing on brain and spinal guardianship can effectively eliminate a person’s ability to make cord injury cases. Frank is a passioncertain decisions. Because guardianship proceeding can be exate advocate for brain and spinal cord pensive, or because nobody thought it was necessary, guardianinjury survivors and their families and ship is not pursued in most TBI cases, so a court never makes a has served in various leadership and determination regarding competency. advisory roles with multiple organizaSo that leaves the question, absent a court determination on tions including Brain Injury Association competency, how is it determined whether a person with a TBI is of Florida, Brain Injury Association of competent to enter into a contact or settle a claim?

America, Sarah Jane Brain FoundaFirst, just because somebody has a TBI does not mean that tion and the University of Florida Presithey are incapacitated, and in most instances, are perfectly cadents Council.

Frank received his Bachelor of Science in Politipable and competent to enter into a settlement agreement. On cal Science from the University of Florida and his Juris Doctorate the other hand, a person with a TBI may have severe deficits and from Shepard Broad Law School at Nova Southeastern University. their incapacity and inability to enter into a settlement agreement Frank is a frequent speaker and contributor on Brain injury topis apparent. The issue truly arises under circumstances where it is ics and issues and has also authored the handbook Brain Injury: unclear whether or not they have the mental ability to understand Where do we go from here? Frank founded the Toral Family Founproblems and make decisions. This is further complicated by the dation whose mission is to collaborate with the healthcare comfact that competency can vary depending on the person’s abilimunity to improve the lives of all persons with a brain or spinal cord ties, and can change due to fatigue, medication, or even situations injury through research, education and access to resources. where a person has transient surges of lucidity.

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conferences 2014

April 3-6 – American Occupational Therapy Association Annual Conference and Expo, Baltimore, Maryland. For more information, visit www. aota.org/conference.aspx 8-12 – World Congress for Neurorehabilitation, Istanbul, Turkey. For more information, visit wfnr.co.uk 16-17 – 4th Annual Traumatic Brain Injury Conference, Washington, D.C.. For more information, visit tbiconference.com .

30-2 – The Second Quadrennial Alaska Brain Injury Conference, Anchorage, Alaska. For more information visit, www.nabis.org May TBD – Galveston Brain Injury Conference, Galveston, Texas. For more information, visit http://shp.utmb.edu/Scholarships/MoodyPrize/ conference.asp

16-17 – Brain Injury Rehab Conference, San Diego, California.

For more information, visit www.scripps.org/events .

June 3-6 – 45th Annual Meeting and Scientific Sessions of the Canadian Association of Neuroscience Nurses, Alberta, Canada. For more information, visit http://cann.ca October 7-11 – 91st Annual ACRM Conference, Toronto, Ontario, Canada. For more information, visit www.acrm.org 24-27 – American Association of Nurse Life Care Planners 2014 Annual Conference, Atlanta, Georgia. For more information, visit www. aanlcp.org 26-27 – 34th Annual Neurorehabilitation Conference on Traumatic Brain Injury, Stroke, and Other Neurological Disorders, Cambridge, Massachusetts. For more information, visit www.gettingbacktolife.com

1-2 – Rehabilitation of the Adult and Child with Traumatic Brain Injury: Practical Solutions to Real World Problems, Williamsburg, VA. For more information, visit www.tbiconferences.org

November 12-15 – National Academy of Neuropsychology 34th Annual Confe rence, Fajardo, Puerto Rico. For more information, please visit www. nanonline.org

1-2 – 38th Annual Brain Injury Rehabilitation Conference, Williamsburg, VA. For more information, visit tbiconference.org

13-16 – AAPM&R 2014 Annual Assembly, San Diego, California. For more information, visit www.aapmr.org

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Canoeing at Vinland’s main campus in Loretto, Minnesota

drug & alcohol treatment for adults with disabilities Vinland Center provides drug and alcohol treatment for adults with cognitive disabilities, including traumatic brain injury, fetal alcohol spectrum disorder and learning disabilities. We make all possible accommodations for cognitive deficits and individual learning styles.

Located in Loretto, Minnesota — just 20 miles west of Minneapolis.

(763)479-3555 • VinlandCenter.org

Lakeview NeuroRehabilitation Center is seeking a Neuropsychologist who will function as a member of the Lakeview New Hampshire Clinical Leadership team. He/she will oversee Lakeview’s APPIC internship training program and will provide primary clinical supervision for the assessment and therapeutic activities of pre-doctoral neuropsychology interns. He/she will also provide clinical oversight and consultative support to our satellite programs. Additionally, he/she will be directly involved in service delivery, including provision of neuropsychological and psychological evaluations as well as individual and group therapy services, to participants in both Youth and Adult programs. He/she will represent Lakeview through research, publication, presentations, training and professional/advocacy organization participation.

This position is located in Effingham, NH. For more information or to apply, please visit our website at www.lakeviewsystem.com or call Human Resources at 1-800-4-REHAB-1 ext. 8776.

Lakeview is an Equal Opportunity Employer.

Minorities are encouraged to apply.

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Neuro Continuum of Care

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literature review Chasing the American Dream: Understanding what shapes our fortune

By Mark Robert Rank, Ph.D., Thomas A. Hirschl, Ph.D. and Kirk A. Foster, Ph.D., (2014 anticipated) Oxford University Press.

It is timely that as we mark 50 years since President Lyndon Johnson’s War on Poverty, Chuck Durgin chose to highlight the issue of poverty and disability in this very special edition.

A number of years ago, as a provider of rehabilitation and support services to people with brain injuries, I often realized that I was preparing people to live at the poverty level or below. This was a sad realization and especially the case with so many young adults who instead of enrolling in college or starting out in jobs and starting their own families, were now learning to live with a disability.

Likely this was with social security benefits and the hope to someday be employed and have a girlfriend or boyfriend. Too often, medical crisis and significant disability are the catalyst for bankruptcy and significantly reduced future earning capacity. This special edition by Chuck Durgin highlights this second and often hidden crisis that many with brain injury and other chronic disability may experience.

The authors have taken an interesting approach to the topic. They interviewed 75 people to define the American Dream, their approach in pursuit of it, and to tell their stories about what has happened along the way.

Second, they attempted to assess the strength of the dream and how inequality of opportunity plays out across one’s life span. Finally, they review contemporary research and thinking on reaching the American Dream. Among these resources is the Panel Study of Income Dynamics started in the mid 1960’s to evaluate the success of the then newly implemented War on Poverty. This study tracks roughly 5,000 households and approximately 18,000 individuals through annual interviews over 40 years of their lives.

In defining the American Dream there was surprising consistency with terms such as “freedom to pursue your passion”, to fully “live out one’s biography” and that hard work should lead to economic security and owning a home. This also included immigrants having new opportunities, overall hope and optimism, and the belief that the next generation should do better than the last. Most importantly, people believed they can achieve the dream and it becomes a pursuit in their lives.

Interestingly, these basic tenets are held by most Americans regardless of socioeconomic position. The authors attempt to “take the pulse” on the American Dream and suggest there is a dark side, the economic hardship of many that get left behind. Some of those facts include that hard work and effort, while important in reaching goals, does not guarantee success. The median wage for workers peaked in 1973 and currently about 1/3 of the jobs in the US are low paying without benefits. In addition there are more part time jobs than full time opportunities than ever before in our history. Yet while Intergenerational economic mobility has been on the decline since 1980, the majority of us will earn more than our parents. Almost 90% of Americans will own a home at some point in their lives while 2/3 of us will not have enough saved to survive a few months without income. It is estimated that 79% of the population between the 30 BRAIN INJURY PROFESSIONAL

ages of 25 to 60 will experience at least one year of significant economic insecurity often through the loss of a job or due to health issues.

The authors introduce some chapters using song lyrics such as Billie Holiday’s God Bless the Child quoting, “Them that’s got shall get, them that’s not shall lose. So the Bible says, and it still is news” in introducing the concept of cumulative advantages and disadvantages that influence one’s life course and the impact of class and race in determining what neighborhood we grow up in, what schools we attend, and what job opportunities we have and the impact on our overall health. The authors use the analogy of a Monopoly game starting with different assets and money in the bank and the story of a pediatrician who describes the fortunate “rung of the ladder” she started from versus the lower income children she now serves in an impoverished neighborhood.

In another section, they use the analogy of the classic kid’s game of musical chairs to describe the ever increasing mismatch between the number of opportunities and those in pursuit of opportunities. While the authors address the issue of cumulative advantages and disadvantages on health, they do not specifically address the impact of disability on economic mobility and the American Dream. We can certainly extrapolate from the other’s stories.

In the final section of the book, the authors discuss who generally wins and loses in the pursuit of the dream and they offer suggestions for legislation and social policy in efforts to give more people access to the Dream. They warn that believing in the American Dream is valuable for many but also warns us that it may also “let us off the hook” in holding ourselves collectively accountable to rectify or right inequalities in that we may have a false sense of believing anyone can make it if they just try hard enough and blame them if they do not make it.

Not surprisingly the policy strategies focus on jobs, salary, healthcare and education. While the authors raise many important issues, the final section is light on where we go from here. Clearly the authors can only delve so far. The last chapter Re-shaping the future is as much a sociopolitical argument for not abandoning the American Dream but rather getting “America on the right track” through advocacy and political action.

Throughout the book are the stories of those who have made it or those who struggle. I recall my own story when in the 5th grade a teacher challenged my belief that I had the same opportunities as the Kennedy children.

Now one might weigh the virtues of being the president of a rehabilitation company with that of being an ambassador to a small country as with Caroline Kennedy, but the fact remains, that as much as I wanted it to be true, I had to believe it to be true. As with most of us, while we deal with our challenges, we need to believe in hope and possibilities. Whether you call it the American Dream or something else, we are all better off with that belief.

About the reviewer

Dr. Debra Braunling-McMorrow is the President and CEO of Learning Services.

She serves on the board of the North American Brain Injury Society. Dr. McMorrow is a past chair of the American Academy for the Certification of Brain Injury Specialists (AACBIS) and has served on the Brain Injury Association of America’s board of executive directors.

Additionally, Dr. McMorrow has served on several national committees, editorial boards, and peer review panels. Dr. McMorrow has published in numerous journals and books and has presented extensively in the field of brain injury rehabilitation. She has been working for persons with brain injuries for almost 30 years.

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non-profit news NORTH AMERICAN BRAIN INJURY SOCIETY NABIS encourages brain injury professionals in Alaska and all others working to provide brain injury services in rural and remote communities to attend the 2nd Quadrennial Alaska Brain Injury Conference which will be held on April 30– May 2, at the Marriott Hotel in Anchorage.

This conference, entitled Shining a Light on Everyday Heroes; Supporting Brain Injury in Your Community, will have a strong focus on providing brain injury services in underserved communities. Chaired by Tina Trudel, PhD, attendees at this conference will benefit from nationally and internationally recognized authorities on the subject of brain injury research, rehabilitation and long-term care. Specialty tracks specific to military and veterans (i.e. blast injuries and caring for wounded warriors) and tribal/rural topics (i.e. telehealth, and using technology to delivery medical and community based services) will be provided.

It’s not too early to mark your calendars for the 2015 NABIS meeting which will be chaired by Dr. Jonathan Silver. Dr. Silver has assembled an all-star scientific planning committee to assist him in developing the educational content of the conference. The meeting will take place April 29–May 2, 2015, at the beautiful Westin Riverwalk Hotel in San Antonio, Texas. A Call for Abstracts will be initiated via the NABIS website, www.nabis. org, this summer.

Brain Injury association of america The Brain Injury Association of America (BIAA), along with Congressional Brain

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Injury Task Force co-chairs Reps. Bill Pascrell, Jr. (D-N.J.) and Tom Rooney (R-Fla.), hosted Brain Injury Awareness Day on Wednesday March 12, 2014.

The event included a morning Brain Injury Awareness Fair, an afternoon Congressional briefing, and an evening reception. We continue to actively lobby for reauthorization of the TBI Act (H.R. 1098); please ask your representatives to co-sponsor the bill. On December 18, 2013, BIAA filed a motion in the United States District Court for the Eastern District of Pennsylvania to participate as amicus curiae (friend of the court) on the lawsuit between the National Football League (NFL) and former players. The motion was filed because the outcome of any settlement between the players and the NFL is likely to have an impact on similar lawsuits brought on behalf of other classes of brain injury victims, as well as on future prevention, research, and treatment of brain injury. BIAA has a number of webinars scheduled for people with brain injuries, caregivers, and professionals working in the field of brain injury. For a complete list of webinars, visit www. biausa.org/webinars.

INTERNATIONAL BRAIN INJURY ASSOCIATION At the time of this writing, the International Brain Injury Association is putting the finishing touches on the Tenth World Congress on Brain Injury in San Francisco. Under the leadership of IBIA President, David Arch and Chariman, Nathan Zasler, this year’s Congress is shaping up to be the largest and most educationally significant brain injury event

ever held. In addition to the over Further details, including information on the preliminary program, exhibit and sponsorship opportunities, and registration and accommodation options are available on the IBIA website, www. internationalbrain.org.

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS The U.S. Health Resources and Services Administration (HRSA) Traumatic Brain Injury (TBI) State Grant Program solicited applications for the TBI State Implementation Partnership Grant Program authorized by the TBI Act of 1996, as amended. The purpose of the HRSA TBI program is to increase access to rehabilitation and other services for individuals with TBI. The goal of this funding opportunity announcement is to support State, Territories, federally recognized Indian Tribal governments and Native American organizations as they address barriers to needed services encountered by children, youth, and adults with and at high risk for TBI. The length of the project period is 4 years with an estimated up to $250,000 per year. The State or Territory contributes $1 to every $2 of Federal funds provided under the grant. Twenty one (21) grants will be awarded by May 6, 2014!

NASHIA Weighs in on HCBS Final Rule: NASHIA has participated during conference calls and meetings convened by the Centers for Medicare and Medicaid Services (CMS) to discuss a recently released rule governing Medicaid Home and Community-Based waiver (HCBS) services -- 1915(c); State Plan option --

Experience You Can Trust in Brain Injury Law. 1915 (i); and Community First Choice -- 1915(k) . The final rule also amends the 1915(c) HCBS waiver program to add new person-centered planning requirements, allows States to combine multiple target populations in one waiver, and streamlines waiver administration. Under the rule, States are allowed to use a five-year renewal cycle to align concurrent waivers and State Plan amendments that serve individuals eligible for both Medicaid and Medicare, such as such as 1915(b) and 1915(c).

Save the Date: 2014 SOS Conference October 27-30, 2014 in Philadelphia, PA! Go to: www.nashia.org

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This March, in recognition of Brain Injury Awareness Month, the United States Brain Injury Alliance (USBIA) is launching a nationwide campaign to increase awareness about brain injuries, including prevention, recognition, and response.

By taking part in the Brain Injury Awareness Month campaign, you can unite with the millions of citizens who are taking action to ensure their voices are heard.

Arm yourself with the tools you need to share your connection to our cause, raise awareness about brain injuries, and help distribute our materials by visiting: www. usbia.org/events/awareness.

In addition, USBIA will be exhibiting at the Brain Injury Awareness Day on Capitol Hill on March 12, and at the International Brain Injury Association (IBIA) 10th World Congress on March 19-22 at the Hyatt Embarcadero in San Francisco, CA. We hope to see you there!

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legislative roundup The longer you wait for the future, the shorter it will be.

— Loesje Soon after Congress convened for the Second Session in January, Members passed the Fiscal Year (FY) 2014 Omnibus Appropriations bill, which appropriated funding to all federal agencies through September 30, 2014. The Omnibus bill adheres to the $1.012 trillion discretionary spending limit agreed to in the Bipartisan Budget Act of 2013/Pathway for SGR (Sustainable Growth Rate) Reform Act of 2013 signed by the President in December. The Bipartisan Budget Act established the amount of funding which can be appropriated for discretionary programs for both FY2014 and FY2015. Discretionary programs refers to those programs which receive an annual appropriations, as opposed to entitlement programs, which are mandatory, such as Social Security, Medicare and Medicaid.

The budget bill repealed a portion of the sequester (across the board cuts) for FY2014 and 2015 by providing several offsets, such as changes to the retirement system for new federal employees and a $5 increase in fees charged per airline ticket. It also reinforces that Medicaid is the payer of last resort. The bill allows states to delay or avoid paying certain claims as long as doing so does not harm patient access to medical care. It also allows states additional time to collect medical child support payments when health insurance is available through a non-custodial parent and to recover settlement money from people who are or become Medicaid beneficiaries as a result of injury or medical malpractice.

Also included were provisions to postpone scheduled reductions in Medicare physician fees and, instead, to provide a small fee increase until April 1, 2014. The bill extended the outpatient therapy caps exceptions process until April 1, 2014, as well. Of concern to rehabilitation providers and advocates is that Congress, in its quest to fix the Medicare physician fee schedule, may target rehabilitation services provided in inpatient rehabilitation hospitals and units, as well as outpatient clinics, to save money.

In February, the President signed a bill to raise the nation’s debt limit until March 2015.

Having resolved the budget bill, FY 2014 appropriations and the debt ceiling, Congress is free to work on FY2015 appropriation bills and other pending legislation. On February 12th, Senator Tom Harkin (D-IA), Chairman of the Committee on Health, Education, Labor, and Pensions (HELP), announced the introduction of the “Keeping All Students Safe Act” legislation to address the use of restraints or seclusion for children with challenging behaviors. It also authorizes training programs to ensure all teachers, administrators, and other school personnel know how to implement preventative programming and positive interventions. And, it requires parent notification within 24 hours when a child has been secluded or restrained.

Rep. Joyce Beatty (D-OH) has introduced the Concussion Awareness and Education Act of 2014 (H.R. 3954), to provide

34 BRAIN INJURY PROFESSIONAL

for systemic research, surveillance, treatment, prevention, awareness, development of rules of play, standards, and dissemination of information with respect to sports-related and other concussions. Rep. Paul Broun (R-GA) has introduced H.R. 3958, Healing Our Heroes Act, to provide for a one-year extension of the Department of Veterans Affairs (VA) pilot program on assisted living services for veterans with traumatic brain injury (TBI). In 2011, VA began the pilot project with contracts to 21 private rehabilitation providers to provide assisted living and post-acute rehabilitation services. Finally, the House Energy and Commerce Subcommittee on Health approved H.R. 1098, the TBI Act Reauthorization of 2013, in December, and is ready to be considered by the full House.

The President’s Budget for FY2015, beginning October 1, 2014, is scheduled to be released in early March. The White House announced ahead of the budget release that the Administration is not proposing a change to the cost of living formula for Social Security and other federal entitlement programs. The Administration is also proposing to eliminate Congressionally mandated automatic spending cuts that are scheduled to continue kicking in through 2015 by adding $56 billion to the budget, evenly divided between military and domestic spending.

As March is Brain Injury Awareness Month, the Congressional Brain Injury Task Force will hosts the annual Awareness Day on March 12th featuring a fair comprised of informational exhibits and resources to be held in the Rayburn House Office Building First Floor Foyer, followed by a briefing and a reception to honor the Task Force. This year, the briefing is to focus on return to work for both civilians and members of the military with TBI. It takes more than just the one day or one month to promote federal policies and funding to advance brain injury. If you are interested in advocating for rehabilitation, community integration and living services and supports, as well funding for research and prevention, you may e-mail your representative and senators from their websites or you may call their offices and ask for their health or disability policy staff to discuss issues of importance.

About the Editor

Susan L. Vaughn, S.L. Vaughn & Assoc., is the Director of Public Policy for the National Association of State Head Injury Administrators and consults with the Brain Injury Association of America on state policy issues. She retired from the State of Missouri in 2002, after working nearly 30 years in the field of disabilities and public policy. She served as the first director of the Missouri Head Injury Advisory Council, a position she held for17 years. She founded NASHIA in 1990, and served as its first president.

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Improving Lives through Caring, Commitment and Community Toral Garcia Battista Attorneys at Law firmly believe that the responsibility of a law practice is not simply a successful settlement but rather providing an individual who has suffered a lifealtering injury, the resources needed to lead a greater quality of life. Focusing on Traumatic Brain Injuries and Spinal Cord Injuries, the TGB firm structure supports care management in the medical and social elements of the clients’ situation through the employment of a team that includes a Registered Nurse and Licensed Clinical Social Worker.

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