Community Inclusion after Brain Injury: busting myths, revealing reality
When Joe was 18 years old, he was involved in a nearly fatal car wreck. In a race against time, a life flight team transported him to the nearest trauma center. His chances of survival were uncertain, but his diagnosis was clear: Joe had experienced a significant brain injury.
As his loved ones worried and waited, Joe began to emerge from the coma. He was assigned a case manager – a person who represented the interests of the insurance provider. Joe’s journey had begun. He was directed to various “treatment” programs that pledged to maximize his rehabilitation potential. One year after his injury, the insurance company determined that Joe had achieved all he was capable of achieving. He was sent to a center designed specifically for people with brain injuries. His bills would be paid by Medicaid. According to the insurance provider, the best possible outcome had been achieved. Joe didn’t agree. Joe wasn’t satisfied with this outcome and he wanted more options. He wanted to decide for himself – and he wanted to return home. Sadly, Joe’s fate was based on myths that limit opportunities.
Myth One: People with brain injuries must be fixed before they can return home.
The Reality. The traditional medical model approach for providing services for people with brain injuries is inadequate in supporting self-sufficiency and community membership. The current service system focuses on “fixing” individuals through the use of deficit- based assessment and planning (Williams, 2008). It is grounded in the notion that individuals living with brain injuries require intervention before they can “earn” the right to re-enter the community. The constellation of deficits becomes the reason to keep people in protected environments, often at great financial and emotional cost to the person, family and society. An overwhelming number of requests from people who wish to make the transition back home are ignored. Instead, they are redirected to nursing homes and other long term care institutions.
Myth Two: People with brain injuries only have one productive year of recovery. After a year: “what you see is what you get.”
The Reality. All too often, medical professionals stop recommending rehabilitation after a person reaches the one-year anniversary of a brain injury. While many people may experience rapid, remarkable progress the first year, progress continues well beyond that time. In fact, it often takes a year for the person to advance to a place where they can develop insight into what has happened and begin to establish their goals for moving forward. It is at this time that individuals’ interest and desire to participate in rehabilitation ignite. The one-year mark is often a place in the journey where people begin to realize new possibilities.
Myth Three: Case managers always work for the patient.
The Reality. The truth is that case managers are often juggling competing interests. That’s not a bad thing; it’s just a reality. Case managers must acknowledge that they must balance the rights of their patients/ clients with the payer source. When a case manager acknowledges the competing interests, he or she can move forward with advocacy that recognizes the needs and goals of both parties – the patient as well as the payer source. Ultimately, their role is to “manage the case” by facilitating a win/win outcome for everyone. It is critical for case managers to disclose who they’re being paid by and to explain the rights of an individual to appeal any recommendations that are made. In an environment of scarce resources, case managers can best assist people by ensuring that available resources are used to attain the goals of the individual, as much as the payer.
Myth Four: The best rehabilitation happens in a post-acute rehabilitation hospital.
The Reality. The best rehabilitation happens in a setting where the individual is most likely to reach his or her immediate goals. The optimal setting should be suited to the individual’s stage in the recovery process. For example, if a person has significant physical needs and requires advanced equipment, a post-acute setting can be ideal. If a person needs to relearn daily living skills, rehabilitation is most beneficial when it occurs at home. By participating in regular routines with the support of rehabilitation professionals, individuals can make progress in a real world environment. Unfortunately, going home is often viewed as the end of the line for many rehabilitation services. All too often, “family education” is offered as a substitute. An entire industry of family-coping-after-brain- injury resources has evolved. If a longitudinal study examining the true cost of sending people home when they are “done” (as mandated by a payer source) were conducted, it would likely reveal some surprising findings. The cost of readmission to medical settings, mental health services and other system interventions is far greater than one would imagine. In contrast, by supporting people at home by providing services needed for self-sufficiency and community membership, there’s a significant long-term savings.
Myth Five: Group homes are community based services.
The Reality. Group homes and other congregate living centers are not “of” the community if they are owned or operated by the same agency that provides the services. If a person can change service providers while remaining in the same living situation, they are not bound by the rules of the provider. Individuals who live independently in a home that they choose have true choice of providers. They are viewed and treated as customers – not commodities. Being “of” the community means being able to live in your own home or your family’s home. It means being a friend, neighbor or coworker, not a recipient of services.
These five myths begin to challenge the dominant paradigm in the field of brain injury. What if there was an alternative perspective? Perhaps there is. Instead of “fixing” a person and sending him or her home, it’s time to consider reversing the sequence. What if individuals who experience serious brain injury were able to go home and work with therapists in familiar surroundings to relearn skills and adapt to changes? By resuming daily routines and defining their own lifestyle goals, the journey to a rewarding and meaningful life just may become a little less arduous. Throughout the rehabilitation process, it’s imperative that we focus on strengths, not deficits and on goals set by the person, not the professional.
By revealing these realities we can begin to hope that individuals like Joe who experience serious brain injuries will be able to live their life, their way – engaged in the community and the things they want to accomplish. The reality is that Joe and others in similar situations deserve the opportunity to chart their own course and create their own future.