Creating Connections to Help Those with Brain Injuries in Southwest Virginia
The 9 a.m. videoconference greetings were filled with typical morning salutations until Jean Groseclose noticed that her friend Dan Cobb was logged in. “There’s my handsome man,” she said with a smile. He blushed and chuckled. For Cobb and Groseclose, the friendly exchange represents much more than a flattering compliment. It’s a friendship that both say would not have developed without an online program aimed at improving the lives of people living with brain injuries in Southwest Virginia.
The significance of the friendship is also not lost on those responsible for establishing the connection. “We deal with so many people in rural settings with no access to transportation, who live in poverty and are not able to afford to travel long distances,” said Frank Hayes, director of the chatroom program where Cobb and Groseclose met.
“We have a lot of folks who lose the ability to socialize and they become isolated.”
Even in its infancy, the program is seen as an example of how technology can better meet the health needs of rural Virginians, and as a unique way to improve the lives of some of the country’s most vulnerable and isolated citizens.
“A lot of the research notes that with any disability, beyond the direct implications, one of the biggest problems is loneliness and isolation,” said Jim Rothrock, commissioner of the Virginia Department of Rehabilitative Services. “They don’t work. They don’t have access to entertainment and recreation the way you and I do. There is a degree of loneliness, and that is devastating. This project … is offering a real solid solution to this problem of loneliness.”
Until this summer, Cobb and Groseclose didn’t know each other, but both have had a long-standing relationship as clients of the Roanoke-based Brain Injury Services of Southwest Virginia. Cobb, who lives in Roanoke, has been a client for seven years, since an apartment fire left him in a coma for nearly four months. Groseclose, who’s in Wytheville, has received help from the nonprofit since coming out of a diabetic coma three and half years ago. Because both have brain injuries, they are often confined to their homes.
“A lot of folks become hermits because of their brain injury,” Hayes said. In August, the two strangers were among 15 people who agreed to participate in Brain Injury Services’ newest program, Community Living Connection, or as it is most often called, CLiC (pronounced “click”). The program was piloted in 2009 for a year with technological help from Virginia Tech and then evaluated by researchers at Radford University. It was retooled and launched in August as a 10-week program.
After completing the first 10 weeks, both Cobb and Groseclose opted to stay on for a second session, which will end this month. For the second 10-week session, the number of participants grew to 26 as the organizers sought to embrace one of the goals of the program: reaching more people.
“We’ve seen that this is worthwhile, so now we want to see how we can deliver it to people who we otherwise were not able to reach” through traditional services like one-on-one case management and rehabilitation therapies, said Helen Butler, executive director of Brain Injury Services. For Cobb, who refers to his apartment as a “prison,” the program has gone beyond his expectations. “Imagine being in a pair of handcuffs. How significant would a key be?” Cobb asked. “CLiC is my key.”
An expanding service CLiC is a new frontier of the massive industry known as telehealth that has been expanding for the past two decades. Telehealth encompasses nearly any type of health care interaction that uses technology, including electronic medical records or prescriptions, or even sending X-rays electronically to be viewed by a doctor miles away from where the image was captured.
Telemedicine, where a patient and doctor meet one-on-one for a visit via a videoconference, is another example of telehealth at work. CLiC doesn’t really fit those typical applications. Instead, it marries the concepts of telemedicine with social networking, using a secured network in the privacy of a person’s home. “It’s astounding what the possibilities are,” said Rothrock, who is keeping an eye not only on CLiC but on other methods for using social media technology to reach Virginians with disabilities. “Each and every day we see how technology is opening something up, and this is one we’re watching.”
Dr. Karen Rheuban, president of Virginia Telehealth Network and medical director of the Office of Telemedicine at the University of Virginia, said that bringing telehealth to a patient’s home is one of the next big movements in the industry. For years, home health providers have been able to monitor patients’ vital signs remotely using technology, but the hope now is to enhance the services to reach people who are housebound either by disease or geography.
Rheuban, Rothrock and other experts said CLiC is a unique application of the technology and one they hope can be replicated. “This is the first I’ve heard of this type of use. I’m not saying no one else is, but most [home-based telehealth] has been used for chronic care disease management and education,” said Bonnie Britton, telehealth program administrator at University Health Systems of Eastern Carolina. “I think it is an awesome innovative idea. You know, your greatest barrier to telehealth is your lack of imagination.”
In a way, CLiC is a virtual support group with some built-in group therapies that take it beyond just listening to the daily trials of living with a brain injury. The group is led by a moderator who is employed and trained by Brain Injury Services to not only coax discussions but also to retrain participants’ brains to improve function. Like a support group, the members discuss problems they are facing because of their injuries, but like a therapy program they work out brain teasers and jokes that are meant to stimulate parts of their brains that are not functioning the way they did before being injured.
Even the way the group gathers, using computers, is seen as part of the therapy, Hayes said. Not only are computer skills seen as vital to functioning in today’s world, but using computers takes a level of brain power that those without an injury likely take for granted. Joining the conversation About 80 miles on Interstate 81 separate Cobb’s Roanoke apartment from Groseclose’s in Wytheville. The two have never met face to face. But twice a week they get to see the other smile as they poke fun at each other and share frustrations brought on by their injuries.
“Anything new, interesting, exciting happen last week?” moderator Trevor Cassell asked on a recent Wednesday morning to kick off one of the three-hour sessions. When no one responded, Cassell tried again. “Jean, did you check your blood sugar this morning?” “Yes,” she replied, nodding. “You feeling good?” “It’s fine.” “Loretta just got out of the hospital. Loretta, how are you? Do you want to share?” A pause. “Loretta, cut your mic on and tell us what’s going on with you.”
For Cassell, these questions are not mere formalities. Groseclose’s brain injury stems from her juvenile diabetes. In 2007, when her insulin pump failed her, she went into a diabetic coma. It changed her life. When she regained consciousness, she said, “I couldn’t talk like I used to, I couldn’t walk right, I couldn’t do nothing.” Later, Cassell steered the conversation to a series of questions aimed at talking about coping with unwelcome situations. “How do you deal with change?” he asked. “You just suck it up and deal with it,” Groseclose quickly responded in her typical blunt style. “Speaking as a former thespian – not lesbian, thespian - you find new ways to deal with things. It is not like an arrow straight and true, it’s curvy,” Cobb said. “You have to rely on others. I have good friends since 1988, parents, this group, my kids.”
“So you have your own personal support group,” Cassell prompted. As the conversation continued, a 55-year-old Radford woman struggled. “I can’t get the words, I can’t talk. I don’t know,” she said. Language is often a struggle for those with brain injuries as they search for the words that they once knew to express their thoughts and emotions, Hayes said. “First of all, what you told me, you did very well,” Cassell said. Groseclose spoke up. “Don’t worry about how you talk with us, we understand totally. It’s no problem,” she said. “Just keep on talking. You will overcome that. I had the same issue.”
As the group continues to meet throughout the 10-week session, Cassell said everyone opens up more and the conversations become more personal and difficult. “I have made it to where we can talk in-depth about life,” he said. “Money is really big, managing money. We’ve talked about credit scores, really hard-core life stuff that has become more serious. We started off lighthearted because you don’t know the group dynamics. Ã¢âÂ¬ Now people, they share, and it becomes easier to talk about those hard things.” The group also becomes more self-sufficient over time, he said.
“They will now independently interact, and it requires less and less direction from me and less prompting from me,” he said. “They are opening up more and more, and that’s what we want.” Some participants stay logged into the chatroom long after the three-hour session has ended. Once, after one of the regularly scheduled afternoon group meetings ended at 4:30p.m., Hayes said he discovered the next morning that some members of the group had stayed on until 2 a.m. “That raises the question about the next step, and how to encourage them to start doing this on their own,” he said.
The role of social media That question is important as Brain Injury Services looks to use the program to reach more people. Of the 15 who participated in the summer session, 13 asked to remain a part of CLiC in the fall. For the second session, Brain Injury Services upped the number of groups from two to three, each with its own facilitator, but it doesn’t currently have the capacity to grow beyond 30 participants. For the fall session, 26 people signed on. Already 30 are set to participate for round three, which will begin the week of Jan. 15. “We haven’t made the determination if you can stay on CLiC forever, but for now we are letting people continue,” Hayes said.
Like the people who stayed logged on into the wee hours of the morning, some are already figuring out how to at least continue the social interaction aspect of the program on their own. Facebook has become a key component. Part of CLiC includes having the group do a social service project. The group Cobb and Groseclose belong to have created a Facebook page for Brain Injury Services as their project. Many have also simply become friends on the social networking site. That’s how Cobb and Groseclose communicate when CLiC isn’t in session. Rothrock says using social media is another venue the state needs to explore for interacting with Virginians living with disabilities.
But it raises questions about maintaining a professional relationship while interacting on a social platform. “Our agency is dealing with ethical issues of contacting clients because that is different than peer to peer,” he said. “Counselors in particular are having to think about this because with younger people they are more inclined to communicate with Facebook, LinkedIn, Google and Twitter. … We’ve got our own Facebook and have discussed issues of how we use it and what we can use it for.” The usual barriers Virginia’s telehealth leaders are interested in the possibilities of replicating the program, but there are barriers, such as cost.
Brain Injury Services does not charge the participants, or bill insurance, for the service. Instead, the nonprofit has relied on grants to run the program. A $105,000 grant covered the startup costs of the program. Fran Rooker, who founded Brain Injury Services with her husband in 2000, received the money last year when she was named one of the Robert Wood Johnson Foundation’s Community Health Leaders. Private and public grants also help support the regular operations, including $10,000 from Verizon, and a three-year, $408,080 grant from the Commonwealth Neurotrauma Initiative Fund pays for staffing. Virginia has been progressive about supporting telehealth, Rheuban said, but questions remain around bringing programs like CLiC into a person’s home: Who is going to buy equipment? Who pays for broadband? How do you engage providers and clients?
Last year, a survey of Virginia’s health care providers found that 40 percent wanted to expand the use of telehealth, said Andy Archer, the Charlottesville consultant who conducted the survey for the state. “That’s an encouraging finding,” he said. “But it’s important to say where are the barriers to telehealth, and one of the most important barriers is a lack of mainstream reimbursement.” The second-biggest concern of the 350 survey respondents was startup costs, Archer said. Telehealth programs have almost exclusively had to rely on grants to get started, Archer and Rheuban said. Butler said she also has to think about the cost of maintaining the program. For now, she has budgeted $60,000 a year for the program. But if she opts to expand it, that will mean buying more computers and finding money to hire more facilitators. Plus, they want to know exactly how the program is helping people.
Researchers at Radford studied whether the 2009 pilot program improved participants’ quality of life and cognitive function. While the research showed that the quality of life was improved, it didn’t show any statistically relevant changes in other areas measured, such as improvement in brain function or life skills. The nonprofit is collecting data to continue to measure and study the program, Butler said. “But they had more self-esteem, and that is crucial,” she said. That’s what has resonated with Groseclose.
She credited the program with giving her the confidence to meet her neighbors. “After the coma, I became more of a loner,” she said. “I liked to be myself. I didn’t have to talk. But just this summer I became more me. I talked to my neighbors. That might have something to do with CLiC because I was making friends in CLiC and I thought I could also talk to others.”