At least 1.7 million people sustain a traumatic brain injury (TBI) in the United States each year, according to statistics compiled by the CDC. Among TBI cases that reach the emergency room for treatment, 80 percent (1.36 million) are treated and released, three percent (52,000) die, and 16 percent (275,000) are hospitalized.
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 clubhouses 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 clubhouses 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 décor 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 to 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.