Healing in the Community

In the United States, 1.4 million people per year sustain a traumatic brain injury (TBI). The number of individuals who sustain TBIs but are not seen by a physician, treated, or correctly diagnosed is unknown.1 The severity of the injuries and the resulting range of problems are quite varied. Therefore, the ideal clinical program provides services that can encompass this wide scope of clinical needs.

State-of-the-art trauma centers and inpatient rehabilitation facilities help minimize the scope of TBIs and maximize recovery from the molecular level to broader levels of function, such as mobility, self-care, and return to community and family activities. However, the majority of this functional recovery typically takes place in an outpatient setting.

About 1.1 million people with a brain injury are seen in an emergency department and released yearly, some with a diagnosis of mild brain injury or concussion, some with no diagnosis at all. Any additional care likely will be done in an outpatient setting. For cases requiring hospitalization, stays are short and the vast majority of their rehabilitative course is accomplished in the outpatient setting. This is driven to some degree by third-party payers' increasingly stringent criteria for inpatient acute and rehabilitation care. Also, the recovery period from a TBI can be quite long, and rehabilitation needs may persist or arise after a period of functional stability. An estimated 5.3 million Americans require long-term assistance with activities of daily living (ADLs) due to TBIs, and ADLs represent only a fraction of this population's overall needs.2

Deficits after a TBI can include:

• physical problems (difficulty moving or controlling arms and legs);

• cognitive/language difficulties (poor memory, judgment, insight, communication skills);

• difficulties with swallowing; and

• behavioral problems (disinhibition, aggression, poor initiation).

Therefore, a comprehensive outpatient TBI rehabilitation program must be able to accommodate varying degrees and constellations of disability, recovery trajectories, social support, and vocational, recreational, and social goals.

This article outlines the outpatient care continuum at the Jerome M. and Sylvan W. Drucker Brain Injury Center, part of the Moss Rehabilitation Research Institute in Elkins Park, Pennsylvania. Our center has been recognized by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research as a Traumatic Brain Injury Model System program.

The Outpatient Continuum

Based on more than 25 years of experience in working with persons with TBI, we have constructed a continuum of care to meet the needs of survivors, ranging from those with severe deficits to those returning to work or school.

Some of our patients do not have the ability to return directly home after their inpatient care. We have developed a community residence where they are able to relearn the skills to return to community living. This residence is supervised by staff experienced in working with persons with a TBI, who facilitate reacquisition of these skills while ensuring safety. These individuals receive outpatient rehabilitation services and are members of a community-based day program while living in this residential setting.

The outpatient continuum may start with a day hospital program, ideal for patients who still have a number of rehabilitation needs but are medically stable enough to be at home. Day hospital care provides the intensity of an inpatient rehabilitation program but allows patients to go home at night, helping families prepare for the full-time responsibilities of home care.

Our community-based day program called Clubhouse is a member-driven program that challenges survivors, not therapists, to develop individual and group goals around supporting the actual running and maintenance of the Clubhouse. Members select work activities, such as housekeeping, kitchen duty, and communication, and participate in a work-driven day to meet Clubhouse daily tasks, such as cleaning, preparing lunch for members, and arranging transportation. The program provides structure during the day and allows the continued development of self-sufficiency and daily skills. While not every person with a TBI can or wants to work, all people need an activity pattern that is meaningful to them and that provides social contact, social support, and a sense of purpose. Rehabilitation professionals and certified brain injury therapists support this member-driven community in helping them meet their goals.

Our outpatient TBI treatment program, the Community Re-entry Program, starts with a comprehensive functional rehabilitation evaluation that assesses the real-life skills needed to manage daily life: time management, housekeeping, community mobility, return to work/school, and leisure activities. Based on the needs identified, a team of rehabilitation professionals devises a goal-driven treatment plan with the client and teaches the skills and strategies necessary to reach his/her personal goals. The client is assigned a case manager who directs the treatment team in supporting clinical goals.

A number of our clients have a history of preexisting substance abuse and other mental health disorders. We address these by utilizing appropriate existing community programs. We educate these service providers about the additional challenges posed by TBI-related deficits and potential strategies to address them. We share as much relevant information as we are given consent to do so. Our experience has highlighted the need for further cross-training between mental health and TBI clinicians and the development of more dedicated dual-diagnosis programs.

After sustaining a TBI, people seek to return to those activities that have been meaningful and productive for them, such as going to work, attending school, and driving. Many questions must be answered when considering whether people are ready to return to work: Are they medically stable? Do they have the physical and cognitive endurance necessary? What are their neuropsychological strengths and weaknesses? Do they have a job waiting for them?

Brain injury therapists serve as evaluators, facilitators, and job coaches who can assist each person in targeting jobs that match his/her skill set, refining the skills necessary for work, and developing résumé and interviewing skills. Volunteer and situational work assessments within the rehab setting and community can simulate work demands and are an effective training environment for the client. Once he/she is offered a job, the therapist becomes a job coach and supports the client in his/her work, both on and off the job. The goal is to reduce the level of support as the person gains skills and confidence. However, we have found that it's best to remain available to the client and the employer for the long haul. It is not unusual to provide extended job follow-up for workers two and three years after successful employment placement. We understand that living with a TBI is a lifelong process and by providing lifelong supports, people can achieve great success.

Support for students returning to high school, college, or postgraduate studies requires a team that understands TBIs, the school system, and applicable education laws. Specially trained educators and neuropsychologists can provide assessments and direction to assist the student, his/her family, and the school in developing a specialized educational plan. TBI therapists become academic coaches, helping students navigate the transition.

Driving is very important to most persons with a TBI. It provides a level of independence and may be a very important aspect of community, school, and vocational reentry. Driving also may allow access to further rehabilitative care and decrease reliance on others. However, a TBI may lead to a number of deficits that can impair safe driving, such as problems with vision, mobility, reaction time, coordination, concentration, and safety awareness. Our comprehensive outpatient driving program provides evaluations of readiness to drive, retrains drivers, and adapts vehicles to accommodate patients' needs (e.g., hand controls can be used to control acceleration and braking; spinner knobs may help with using the steering wheel; and lifts and anchoring systems can allow people to drive from wheelchairs). Ongoing medical problems that may preclude safe driving, such as epilepsy, also are addressed.

Mobility and movement issues can continue long after traditional therapies end. Our outpatient Motor Control Analysis program provides state-of-the-art evaluation of motor problems and can improve a person's level of functioning. Computerized gait analysis can provide information to guide therapy, the use of orthoses, and other interventions that will maximize ambulation ability.

Appropriate staffing for these outpatient programs is critical in ensuring their success and the success of clients. A range of rehabilitation professionals is needed to support clients as they begin life after a TBI, including occupational, physical, recreational, and speech therapists; psychologists and neuropsychologists; and physicians. These clinicians need to be well-versed in the specific challenges and needs of patients who have sustained TBIs. All of our outpatient staff are certified as brain injury therapists through the Brain Injury Association of America.

Conclusion

Because of the wide range of deficits and degrees of functional loss after a TBI, it is essential that an outpatient rehabilitation program provide a sufficient scope of services. Quality of care is optimized by the retention of staff experienced in the nuances of working with patients with a TBI. This is especially important because patients often present with a number of different physical, medical, cognitive, and behavioral problems. Therefore, working with community behavioral health resources is also important.

References

1. Langlois JA, Rutland-Brown W, Thomas KE. Traumatic brain injury in the United States: Emergency department visits, hospitalizations, and deaths. Atlanta: Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; 2004.
2. Thurman DJ, Alverson C, Dunn KA, et al; Traumatic brain injury in the United States: A public health perspective. J Head Trauma Rehabil 1999; 14 (6): 602-15.