Community Integration

James F. Malec

GENERAL PRINCIPLES

Throughout this chapter, the term “brain injury” (BI) refers to a variety of acquired brain injuries, most commonly, traumatic brain injury (TBI), stroke, hypoxia/anoxia, and cured brain tumor. It does not include progressive brain disorders, such as, the dementias or developmental disorders.

The concept of community integration is best understood via the four following categories [1]:

• Assimilation—The individual with BI fully participates in community life; special needs resulting from BI are not identified and/or supported by the community.

• Integration—The individual fully participates; needs are identified or supported.

• Segregation—The individual does not fully participate; needs are identified or supported.

• Marginalization—The individual does not fully participate; needs are not identified or supported.

The degree of acculturation may differ across needs. For instance, integration is more common after BI for medical needs than for vocational needs.

Early Intervention

Early rehabilitation intervention, ideally within days of injury onset, is typically more efficient, promotes recovery, leads to less supervision and hours of care needed later, and is less expensive over a lifetime when compared to rehabilitation that is delayed [2]. However, rehabilitation provided later, even years postinjury, can still be effective in reducing disability, care, and supervision needs [3,4]. Most survivors of BI will return to the community [5,6]; often overlooked during early recovery is the need to provide a long-term perspective to families that includes eventual return to community.

Coordinated Care by Specialized Providers

For patients with complex injuries, coordinated care provided by specialists encourages return to community [2,7]. Care coordinators or “resource facilitators” (see description later) can serve as continuous, knowledgeable, and accessible points of contact and assure the patient receives services from well-qualified practitioners in specialized facilities.

Long-Term Follow-Up and Care

Recovery following severe BI is often measured in months to years. In light of the trend toward reduced rehabilitation lengths of stay (LOS) (TBI Model Systems rehabilitation LOS: 2014 = 19 days) [5], much of this recovery will occur in the community or other posthospital settings. This trend has increased the importance of rehabilitation programs either directly offering long-term outpatient treatment and follow-up, or referring to affiliated reputable programs that do so. Adapting to change after BI is oftentimes challenging. Even as progress is made and successful community living with or without supports has been realized, a change in family status, health, work, external supports, or environment can result in renewed need for rehabilitation services. A system of care that allows for long-term follow-up is critical.

Family Education

Families may be the sole providers of community-based care for individuals with BI. Behavioral, cognitive, and emotional residuals following BI significantly interfere with successful community living. Teaching families about these and other common issues, and imparting problem-solving and advocacy skills, fosters successful coping and integration.

Education for families in formal settings, such as structured classes, or more informally, via BI support groups, can be helpful, as can use of multimedia and web-based education approaches [8].

Community Partnerships

Connecting patients and families with community services, peers, and advocacy organizations is essential for successful community integration. Examples of traditional services include: social services, state department of vocational rehabilitation, public education, public health, health care funding (Medicaid, Medicare), subsidized accessible housing, and independent living centers. These services are not available in all locales, particularly small town and rural communities. An individualized network of community supports may need to be constructed involving, for instance, family and friends, and social and religious groups. Such social support networks promote positive outcomes after BI [9]. Lack of transportation is a common obstacle to employment; family and friends are often the most reliable providers of transportation.

Resource Facilitation

Resource facilitation (RF) is a process by which a coordinator provides assistance and advocacy to “break down barriers, increase access, and facilitate timely, coordinated management of resources” [10] to support the individual with BI’s return to full participation in family and community life. The RF coordinator assists the individual with BI to develop a self-directed plan for community reentry, identify and gain access to needed services and supports, and develop a sustainable network of these services and supports. The Brain Injury Associations or Alliances in many states of the United States provide RF.

Social Versus Medical Model Interventions

RF represents a social model intervention [11]. In the social model of disability, the target of interventions is the physical and social environment in which the person with disability lives and works. The goal of social model interventions is to reduce physical and social environmental obstacles to participation in community life following disability. These types of interventions are in contrast to medical model interventions in which the target is the disease or impairment that creates illness or disability. These models are not mutually exclusive. To the contrary, the most successful approach to assisting individuals with BI in community reentry typically combines elements of both models.

NEEDS ASSESSMENT

Community reentry should be considered throughout the person’s hospitalization, inpatient and outpatient rehabilitation, and follow-up. Begin with the end in mind [12]. The type and intensity of services to support community reentry will be highly individualized. Increasingly, BI is being recognized as a chronic condition [13]. Needs will change over time postinjury and therefore need to be continuously assessed. Correct “dosing” of services optimizes outcome and responsible stewardship of the health care dollar. The indicators described in the following sections should be considered in recommending the intensity and extent of services along the continuum of care.

Severity of Injury Versus Severity of Disability

Initial injury severity has traditionally been important for determining acute medical and surgical intervention and rehabilitation. Assessment of disability at the time of hospital discharge, however, (assessed, e.g., by Discharge FIM [14] or Mayo-Portland Adaptability Inventory [MPAI-4]) [15] will give a better indication of the extent and intensity of future services required [16].

Time Since Injury

Chronic injuries typically require greater intensity of service provision, but extended chronicity does not preclude capacity to benefit from those services [3,4].

Self-Awareness

Impaired self-awareness has a negative impact on outcome and is associated with poorer compliance and participation in treatment, need for more intense rehabilitation services, and longer LOS [17]. However, treatment studies suggest that this can be mitigated by comprehensive holistic rehabilitation [18] and specific interventions designed to improve self-awareness [17].

Depression

Depression is prevalent following BI (40%–70% are diagnosed within 2 years of injury) and negatively affects outcome [19].

Substance Abuse

Those with a preinjury history of substance abuse are at higher risk for return to abuse postinjury; substance abuse negatively affects outcome [20].

Preinjury Issues

Preinjury unemployment, limited education, preinjury chemical dependency, and/or psychiatric history negatively affect outcome [21,22].

Family Issues

Preinjury family dysfunction is present in more than 25% of families at the time of injury and is likely exacerbated by stresses related to injury [23].

The negative impact of emotional, substance-related, family, and some preinjury issues can be mitigated with early detection and specific treatment [24].

INTERVENTION

Successful community reentry requires the integration of community-based services with rehabilitation services. Malec [25] identified two major categories of programs following inpatient rehabilitation: Supported Living programs and Intensive Rehabilitation programs. The overarching goal of Intensive Rehabilitation programs is to improve the functional and adaptive abilities as well as community participation of those served, whereas Supported Living programs aim to maintain stability in function, adaptation, and participation. Supported Living programs include: (a) programs for patients who are slow to recover, (b) long-term residential programs, and (c) long-term community-based supported living programs. Intensive Posthospital Rehabilitation programs include: (a) neurobehavioral—pharmacologic and behavioral treatment for patients with severe behavioral disturbances in a highly restricted environment; (b) residential—rehabilitation and community services in an environment with professional supervision throughout the day; (c) outpatient holistic day treatment—intensive, integrated, interdisciplinary BI rehabilitation for those with severe and pervasive disabilities typically including impaired self-awareness; (d) traditional outpatient community integration—focused rehabilitation for individuals with circumscribed and self-identified goals; and (e) home- and community-based—interdisciplinary rehabilitation to improve independent living and community reintegration provided in participant’s homes and community settings. Most patients, even after severe BI, are appropriate for one of the latter three types of outpatient programs. A number of reviews describe such programs and endorse their effectiveness [26–29].

Rehabilitation Intensity

Those with more severe and pervasive disabilities generally require more intensive rehabilitation. Pre- or postinjury factors that contribute to severity of disability include: severely impaired self-awareness, depression, other pre- or postinjury psychiatric or personality disorder, current or past substance abuse, or other disabling conditions. Family, social, or environmental disadvantages may also enhance overall disability. Rehabilitation can be effectively delivered either in outpatient clinic settings or in the community [4,30]. Intensive holistic day programs, although not available in many areas, can achieve superior outcomes (for instance, 60%–70% of participants ultimately transition into community-based employment) [18].

Facilitative Services

RF and specialized vocational services (SVS) are also typically required for successful community reentry. RF and SVS may be sufficient in some cases without outpatient rehabilitation.

Vocational Reentry

Successful vocational reintegration often requires RF, SVS, and supported employment [7,10,11,31]. Please see Chapter 68 for a detailed discussion of this topic.

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