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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 socio-economic 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 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 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 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 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 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 numb er 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 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 disability-specific 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.
Without question, many developing countries are not able to enforce basic social protections and provide minimal socio-economic 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 chil dren, 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 for serving individuals with ABI (Brown and Gordon, 2004).
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 pre-injury 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.
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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: firstname.lastname@example.org.