Adult TBI clubhouses offer hope: as brain-injured adults struggle to adapt, the TBI clubhouse movement struggles for recognition, support.
Among those who suffer more serious brain injuries, many will never fully recover. Typically, following an initial hospitalization, these TBI patients will be discharged into inpatient rehabilitation. However, those rehabilitation periods are continuing to shorten, from months in the past to weeks today, leaving the patient with less speech, physical, and occupational therapy with which to face the difficult road ahead. After rehabilitation, children and adolescents up to age 22 can, in most states, transition directly into developmental disability services that offer further rehabilitation, education, and training support. But adults aged 23 and older often face a more difficult road when their rehabilitation period ends.
For these adults, "when rehab ends, they pick up the pieces of their lives," says Betty Bacalu, RN, of Sagamore Hills, Ohio, whose son, Lloyd Turner, suffered a severe TBI injury in his mid.-20s after falling from a moving truck in 1997.
"My work as a nurse ended when Lloyd came home," says Bacalu, explaining that when adults recovering from severe TBIs come home they often bring significant, uncomfortable challenges to their families. If the injured adult was a breadwinner, others must pick up the economic burden. As a result, "many are left sitting home as their parents, spouses, or family members go off to work. There's nowhere for them to go--no job, no work, no friends. Those who had jobs and careers can remember who they were, but that part of their life is gone."
After two years at home with Lloyd, and learning about the clubhouse model at an Ohio convention, Bacalu got involved with the TBI clubhouse movement, founding the Ballinger TBI Clubhouse in Akron, Ohio, which since merged with the Community Health Center to form the Community Clubhouse for Brain Injury in April 2008. Today, the clubhouse has about 35 members and offers programs five days per week. As director, Bacalu is supported by the efforts of two program coordinators--Eric First, BA, and Gina Anzuini, MEd, CRD, CBIS--as the clubhouse delivers services to some 30 registered members, about half of whom attend on a typical weekday.
Nationwide, a slowly growing number of clubhouse like Akron's Community Clubhouse for Brain Injury bring together individuals striving to adapt to serious brain injuries, offering a place to meet, establish new friendships, learn and practice basic life skills, and find a new social home. Clubhouse advocates estimate that for the over 90 percent of adult TBI patients who leave rehabilitation with nowhere to go, such clubhouse provide welcome freedom from their loneliness, a place to fit in, and a healthy alternative to isolation at home and the ever-present threats of depression and substance abuse.
Often, as in the case of the Community Clubhouse, the facilities are modest. The clubhouse offers a single large room surrounded by a number of small offices, restrooms, and a kitchen. Its decor defines various functional areas: Chalkboards, tables, and chairs form a teaching/discussion area, while a few desks equipped with desktop computers offer a training area, and an informal seating area with a bookshelf offers a place to socialize or read. Thanks in part to the efforts of the Community Health Center, many clubhouse members have obtained supportive housing in nearby apartments and homes, making it easy for them to attend clubhouse programs on a daily basis.
It is common for brain injury patients of suffer a variety of long-term problems, says Bacalu, including a variety of cognitive deficits. These may leave the patient walking, talking, and looking physically fine, but unable to remember, concentrate, or perform previously known work skills. The individual may also suffer from other cognitive impairments that affect mood or personality, including impulsivity or tendencies to become easily frustrated, emotional loud, or angry. Common physical problems may involve speech problems or a stroke-like hemiparesis (partial paralysis) on the right or left side of the body.
Despite the fact that TBI is the fastest growing disability in the U.S., Bacalu found that "brain injury" is not a medically recognized disorder. "Adults with TBI don't get a TBI diagnosis. Instead, they get a list of symptoms like seizure disorder and hemiparesis, or of co-occurring problems like depression or substance use disorder." While medicine recognizes cognitive disorders, there are none specific to adults with TBI, so, she says "their cognitive dysfunctions end up getting tossed in with disorders like Alzheimer's Disease and dementia."
Bacalu says that if TBI was recognized as a chronic health condition, it could be treated that way, instead of requiring TBI patients to seek piecemeal treatment for its wide range of symptoms. Such recognition would gain greater understanding and attention in the medical community where, at present, "there are only a handful of neuropsychologists available, and many MDs are apprehensive about treating it because is so difficult and time-consuming to understand."
RELATED ARTICLE: Transitional employment for brain-injured adults
At the Community Clubhouse for Brain Injury, Bacalu and her small staff conduct an assessment of each member's psychosocial and vocational skills. The result is a mutually-agreed set of goals for each member, targeting improvements in personal skills, cognitive skills, and employment-related skills. Often, member goals begin with the challenge of becoming aware of their own behaviors and learning effective self-management strategies. Then, they're better able to fit into the clubhouse community, where they work on a variety of tasks, or to join in on work or recreational forays to local gardens, farms, or other sites. Those who gain sufficient self-awareness and self-management skills are then encouraged to become part of the Community Clubhouse's growing transitional employment program.
"The changes that we ask members to make are often slight, but they make a difference," Bacalu explains. "We teach coping skills that help members to appropriately express themselves, while helping them to control their responses to the behavior of others. Often, members learn a lot from their peers by working together. There's a bond of acceptance and an understanding, shared by members, who strive to help each other."
The Clubhouse's transitional employment program, which is gaining support among regional employment partners, gives members a chance to get back to work in the community, receive a competitive wage, and benefit from the help of a Clubhouse job coach. In turn, the Clubhouse guarantees that the member's job duties will be performed properly on a daily basis. Many employer partners divide a full-time job into several part-time positions, enabling multiple members to get involved.
BY DENNIS GRANTHAM, SENIOR EDITOR
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|Title Annotation:||BRAIN INJURIES|
|Date:||Apr 1, 2010|
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