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Member-Driven

ADAPT Clubhouse asks members to cope pro-actively with brain injuries.

On Jan. 20, 1984, Matt Brooker, a freshman at the University of Virginia, was partying at a fraternity house in Charlottesville when he opened his eyes and found himself in a hospital bed.

Brooker, 42, began his story in high school. “I’m very, very proud of the fact that I worked hard in high school,” he said, listing the A.P. and honors classes he took before graduating in 1983 from Vienna’s James Madison High School and going on to UVA.

When he awoke in the hospital, the attendants at his bedside asked him if he remembered the party. “I replied affirmatively,” Brooker said. “They told me that during the evening my friend and I were both apparently attacked by people from town.”

They also told Brooker the date. It was May.

Brooker had been in a deep coma for four months while his brain fought to cope with the trauma that had been inflicted upon it. His doctors told him he was one of the most seriously injured people ever to be kept alive at UVA hospital. “I had absolutely no comprehension of how much time had passed,” he said.

But he remembers the years that have followed. He spent six months at the hospital in Charlottesville, one and a half years at Inova Mount Vernon Hospital and two years in comprehensive rehabilitation at a special facility in Galveston. He returned to his parent’s home in Vienna and was hired to work for a long distance telephone company. He entered numerical data for 12 years until budget cuts took his job in 2001.

Brooker said his brain still stores the knowledge he absorbed as a teenager, but it is difficult to access. His mother has become adept at giving him hints to help him recall things. “It’s all up here,” he said, tapping his forehead with his finger.

The symptoms of traumatic brain injury vary widely depending on the severity of the injuries and the regions of the brain involved. Deficits in memory and impulse control are common. Some people lose motor control; others may struggle to speak. Formerly routine tasks can seem impossible. Returning to a former job may not be an option.

Many people who suffer traumatic brain injuries believe a return to productive work will put their lives back in focus. For years, Brain Injury Services has sponsored a facility on the Richmond Highway to help northern Virginians with brain injuries learn to function again. It used a traditional, classroom-focused framework, according to its manager, Brian McCarthy. Clients would be given instructional tasks, then would practice specific skills, like typing, with the goal of regaining their independence at home and perhaps in a job.

That model changed in 2004, when the facility transformed itself in line with a new “clubhouse” philosophy for brain-injury therapy. The facility near the Saudi Academy on Mohawk Lane, now called the ADAPT Clubhouse, does not tell patients they will become independent by submitting to a system. Instead, it gives its members responsibility and independence to create the system in which they want to participate.

“EVERYTHING IS MEMBER-DRIVEN,” McCarthy explained. “All decisions made within the clubhouse are made by all members.” Meetings are held throughout the week to decide anything from the theme of the monthly social to a new logo for the organization.

Lisa Garver, who has been director of the program since before the switch, said staff members have a policy of always asking members, “‘What do you want to do?’ That’s not something we used to say so much before.”

McCarthy said there are only 16 clubhouses nationwide for people with brain injuries. The state of Virginia, with six of them, is a leader in the new approach. Eighty percent of ADAPT’s funding comes from the state, and the rest comes from local government and private donations, according to Garver.

The clubhouse’s 25 members pay on a sliding scale, some as little as $1 day. Most members come in for a few days each week. From 9 a.m. to 3 p.m., a day at the clubhouse is structured to contain all-member decision-making meetings; unit meetings, when members of the kitchen, communication and gardening units make long and short-term plans; and about three hours a day for unit-members to perform responsibilities like cooking, cleaning, grocery shopping, harvesting vegetables, refilling bird feeders, writing a newsletter, typing letters, working at the reception desk and interviewing applicants for employment and membership.

The clubhouse has a staff of five, enough to facilitate the work that needs to be done, but not enough to run the clubhouse without participation from members. In the clubhouse office one day, McCarthy demonstrated this balance by gesturing to the corners of the room. “It’s not exactly the most neat and tidy and orderly — that’s because that’s how the members left it.”

“If they want a clean clubhouse they have to make it that way.”

ON A WEDNESDAY morning the week before Thanksgiving, the kitchen unit was doing something they do regularly, volunteering at the food pantry of United Community Ministries. “I love it,” said Robbie Stauffer, who was a Web page designer until a car accident put him in a coma for four and half months. “I love anything and everything to do with [food] preparation.”

But it doesn’t have to be about food. He also enjoys the kitchen unit’s weekly clean-up at UCM’s Janna Lee Community Center. “Hey, it’s work. I love work, too.”

Recalling the people from his church who helped at his home after he suffered a stroke one and half years ago during surgery to remove a brain tumor, Chuck Swindell said volunteering was a way to repay some of that kindness.

The kitchen unit used to make deliveries for Meals-on-Wheels to elderly people in an apartment building. “The people you deliver the meal to are always so happy to get it,” he said. “They greet you at the door with a smile.”

Swindell has a wife and two daughters. “My wife has really stepped up,” he said. “She’s working two jobs.” Things have been harder with his teenage daughter. “I haven’t been able to do things with her like I did before.” Before his stroke, they were close. He had taken her to two ’NSYNC concerts. Now, “It’s tough,” Swindell said. “I do something stupid, she’s always laughing at me.”

But they are getting used to one another again. Now that she is 16, she’s driving her father’s car and helping him run errands.

BROOKER JOINED the clubhouse in 2004. After realizing he didn’t have the mobility necessary for the kitchen and maintenance unit, he joined the communications unit instead. He found a niche as one of the main reporters for the newsletter. Initially, this meant finding and rewriting relevant articles from the Washington Post. Now, his reporting has become more sophisticated. “I don’t get stories from the newspapers any longer,” Brooker explained. “I write them out of my own mind.”

While taking honors English classes in high school, Brooker said, “I used my mind a lot.” Being responsible for much of the content of the clubhouse newspaper is forcing him to stretch his abilities again. “I enjoy and want to use my mind as much as I can. The more you use it, the better you use it.”

In order for the clubhouse to function, its members must pick up new skills, McCarthy explained. “That’s the whole idea, to experience something new, try something new. Hopefully those skills lead to a job placement or an independent living situation. But if not, it’s still a productive focus in their day. It’s something they’re a part of, and membership is for life.”

Lessons at the clubhouse tend to be subtle. “A lot of things that happen in the clubhouse are not things we directly work on,” McCarthy. Everything the members do during the day builds engagement, initiation and social skills, although there is no didactic focus on any of these areas. Garver added that the clubhouse model is successful because it fosters these higher-level abilities, which are ultimately more important to the lives of people with brain injuries than rote mechanical skills. She said it is more important that the kitchen workers learn that they can plan a month of menus in advance than that they learn to cook an individual meal. Organizing the clubhouse is empowering, the staff agreed, and members added that the support they receive from one another is also crucial. “Members come here and this is their world,” McCarthy said. “It’s everything they can make it.”