For Brain Injury Survivors, New Ways to Connect

With her RWJF grant, a Community Health Leader funds an online program that brings brain injury survivors together despite distances and disabilities.

    • May 19, 2012

A groundbreaking telehealth program is providing therapeutic supports, coaching and encouragement to people living with brain injury thanks in part to funding from a Robert Wood Johnson Foundation (RWJF) Community Health Leader award.

When Fran Rooker was named an RWJF Community Health Leader in 2010, the Radford, Va., mother was cited for her efforts to “turn a personal tragedy into a living legacy” for her late son, Jason. In a fluke accident in June 1996, 10-year-old Jason was strangled by a rope hanging from a tree in the family’s yard. Though he was revived, the loss of oxygen to his brain left him severely injured, hospitalized for months and requiring round-the-clock care once home. In the 15 months before Jason’s death in September 1997, his family became painfully aware of the shortage of services for brain injured individuals and their families in southwest Virginia.

In response, Rooker and her husband, Greg, founded The Jason Foundation to provide education, support, resources, and funds to brain injury survivors and their families, and to promote the establishment of more community-based services for them. Then in July 2001, the foundation funded the establishment of Brain Injury Services of Southwest Virginia (BISSWVA), to develop and provide such services.

Thanks to medical advances, more people with brain injuries—including many Iraq and Afghanistan war veterans—are surviving what would previously have been life-ending injuries. However, those survivors often face long-term challenges in speech, cognition and movement that can make daily living a struggle. And many of the rehabilitative services they need are not covered by Medicaid, Medicare or private insurance, Rooker says.

By 2009, BISSWVA was serving more than 300 families annually across an 11,000-square-mile area of the state. “Our board looked at the standard, clubhouse program where people physically come to a building for help, and that wasn’t possible in our area,” Rooker says. “We didn’t know exactly what we were looking for, but we believed that somewhere out there, there was technology that could be used.” In partnership with assistive technology experts at a local university, Virginia Tech, BISSWVA devised a pilot program. It allowed people living with the disability of brain injury to go online from their homes several times a week for teleconference sessions with a facilitator who led discussions and therapeutic exercises. The program was called Community Living Connection—CLiC (pronounced click) for short.

Rooker says that when the pilot program showed great promise, BISSWVA leaders “began looking for ways to offer it as a service to our clients—and that’s when the Community Health Leader award arrived!” With that $105,000 RWJF grant as the anchor for others, she says, “we were so excited because it meant we could roll forward with this. We don’t know of anyone else doing a program like this presently. There are online chat groups and online support groups, but none has used the technology that we’re using and none has incorporated rehabilitative therapies in their sessions.”

Each CLiC program round runs for 10 weeks, during which groups of 10 to 12 participants meet online two times a week for three-hour sessions. CLiC pays for internet service for those who cannot afford it, and loans each participant a computer equipped with a teleconferencing software system called Elluminate. The technology allows group members—some of whom may be self-conscious about how their injuries make them look or sound—to be seen on other participants’ computer screens, to be heard on audio but not seen, or to type comments for others to read, as they wish.

CLiC activities are designed to help recover skills often diminished by brain injury, Rooker says. Working on a CLiC newsletter and creating agendas for CLiC sessions help strengthen organizational and planning skills. Other activities target memory development, perseverance, problem solving and vocabulary building. “Even speaking to each other during the session is a reinforcement of social skills,” she says. “Many brain injury survivors are left with behavioral and emotional disabilities or challenges. The facilitators of the sessions are certified brain injury specialists who are trained to assess participants’ symptoms and plan the sessions according to the individual needs.”

Frank Hayes, the BISSWVA program director, is also a facilitator who runs CLiC sessions. “If we’re in a session with, say, a group of 10 people, you may have 10 different levels of ability whether on the computer or verbal or cognitive abilities,” he says. “So there has to be a lot of flexibility, but it really has worked well because there are such positive group dynamics with participants helping one another. For example, we had someone with a speech impediment related to their brain injury who was struggling to communicate, and others in the group would say, ‘You’re doing well, take your time, you’re doing fine.’ And that has enabled the person to become much more involved and verbal.”

“We have one gentleman who, because of his brain injury, is bedbound, but we were able to set up a laptop computer at his bed. We have a couple of people who are unable to move a mouse, so they have mouse-substitute devices that allow them just to move their fingers instead. We have been able to use adaptive technology devices so everybody can participate.”

For some of those who have participated, the results have been dramatic, Hayes says. “The mother of one of the participants in the sessions has come back to us almost in tears, she’s so grateful. Her daughter used to be so socially isolated and shy, and kept to herself even when taken to the church or the market. Now, having gotten comfortable in the CLiC process, the daughter actually is talking to people, going into the community and interacting.”

Rooker and Hayes have watched CLiC grow from a total of 17 people in its first round to 26 people in its second round, 30 people in its third round—and, for the fourth round begun in April 2011, 32 people, as many as CLiC can accommodate unless it gets more computers. Its success has caught the attention of the local newspaper, the Roanoke Times. “Even in its infancy,” the paper wrote, “the (CLiC) 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.”

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