Bridging the Gap
Shepherd Center contributes expertise to Georgia’s Brain and Spinal Injury Trust Fund Commission to help get lives back on track.
Many of us take these things for granted. But for people living with a traumatic brain or spinal cord injury, achieving these and other life dreams may seem out of reach. Even figuring out how to access, coordinate and pay for services or equipment beyond the acute rehabilitation period can be challenging. Thankfully, Georgia’s Brain and Spinal Injury Trust Fund Commission is working to change this – all the while helping to lift spirits and enhance lives post-injury.
This unique state agency – one of 23 like it across the country – was founded in 2003 to ensure Georgians with traumatic brain injury (TBI) and spinal cord injury (SCI) are not only valued, but also have equal opportunities when they transition back to their communities. In fact, the Commission’s very existence was driven by a handful of people recovering from these types of injuries who “dreamed of an agency that understood the lifelong needs of people with traumatic injuries – one that was committed to supporting these individuals not just in the critical moments after the injury, but throughout their lives.” Today, that’s exactly what the Commission is doing with the help of experts at Shepherd Center and other partnering organizations.
Granting Financial Support to Bridge the Gap in Services
“Unless people with these type of injuries are well situated financially or have (very good) insurance, their standard of living drops,” says Craig Young, the Commission’s executive director. “We are able to give direct financial assistance to people who need it.”
In particular, the agency helps pay for necessary services and medical equipment not covered by Medicaid, Medicare or private insurance. So far, the Commission has awarded more than $15 million to more than 3,000 Georgians with traumatic injuries who were deemed eligible.
“It could be something as simple as a computer so they can stay connected with family and friends or something more significant like durable medical equipment that can raise someone out of their bed to get to the bathroom,” he says.
People apply for home modifications (e.g., roll-in showers, ceiling lifts), assistive technologies, and additional physical, cognitive, behavioral, speech therapy or personal care support services. But transportation is the most common request – and can open a world of possibilities. “If we can give someone access to a vehicle that may give them the ability to go out, get job training and resume work, that is probably the best possible outcome,” Young says.
That is something a man from Macon, Ga., recently found out. Told he would never walk again after sustaining a C-5 to -6 injury, this former athlete had plans of his own – visions of starting a wellness center that caters to people with and without injuries. Living with his mom, he yearned for his independence. He applied to the Trust Fund for assistance to purchase a van so his family could drive him to appointments and school. But after reviewing his goals, the Fund decided to pay for driver’s evaluation and training with rehabilitation specialists. These efforts helped get this man get back in the driver’s seat – putting him in control of his own transportation and future.
It’s Not All about the Money
In addition to providing grants, the Commission is intensely focused on developing a state action plan to better align services and develop community support to meet patients’ needs. By mandate, the Commission is also charged with tracking and monitoring cases of TBI and SCI to identify what resources are needed.
The Commission has implemented a Statewide Advisory Committee made up of experts from provider organizations and statewide agencies of brain and spinal cord injury services. This group makes recommendations to the Commission about the overall needs of people with brain and spinal cord injuries. Within this group are numerous sub-committees that work on the state action plan to prioritize needs. The Commission is also the lead state agency for traumatic brain injury, as mandated by the TBI Act.
The Commission’s success is due, in large part, to Shepherd Center’s continued leadership and involvement, Young says. The agency relies heavily on clinical counsel from Shepherd’s staff to help evaluate and prioritize Trust Fund applications. Staff members also serve as expert advisors on a number of workgroups, which focus on data collection, program evaluation, and the short-term and long-term needs of children and adults with brain and spinal cord injury.
“A lot of times, there are specific medical issues, and they need some guidance from us to help them understand what a certain injury does to someone and whether a service or equipment makes sense, or perhaps there is a technology we know would help,” explains Andrew Dennison, M.D., a Shepherd Center physiatrist who was appointed as a Commissioner to the Trust Fund, which is chaired by former patient J.D. Frazier.
“They’ve been such an integral partner,” Young says. “The expertise they bring to the table – caring for these patients, knowing and anticipating what they need to be able to lead meaningful and independent lives – has helped to shape the policies we have to give out grants.”
It’s also given Shepherd yet another way to make a difference and ensure the unique and lifelong needs of these patients are being considered.
“We do an incredible job in the 40 to 60 days they are with us,” says Susan Johnson, M.A., Shepherd’s director of Brain Injury Services, who has been involved with the Commission since its early days. “But there is life after a catastrophic injury. The advocacy work by many volunteers has created much awareness about brain and spinal cord injuries that have resulted in statewide changes that are improving peoples’ lives.”
People with TBI or SCI who are U.S. citizens and Georgia residents are encouraged to learn more about the Commission and whether they are eligible for assistance. Visit www.bsitf.state.ga.us or call 1-888-233-5760.
A Critical Mission
The Commission—solely funded by a surcharge on individuals convicted of driving under the influence—plays three important roles:
- Providing direct support to people with traumatic brain and spinal cord injuries
- Keeping track of people who are injured through a centralized registry
- Advocating for improved services statewide
Who Serves on the Commission?
The Governor-appointed Commission is comprised of people with brain or spinal cord injury, their family members, and representatives from various state agencies and organizations that provide services to these individuals. Experts – including many from Shepherd Center – lend their expertise as volunteers to help raise awareness and advocate for people with SCI and TBI.
Shepherd Center staff members involved with the agency’s work are:
- Susan Johnson, director of Brain Injury Services sits on the State Wide Advisory Committee and Brain Injury Task Force.
- Ron Seel, Ph.D., director of brain injury research, sits on the Data Committee that is working on a program evaluation model for determining grant applicants needs and outcomes.
- Bridget Metzger, director of injury prevention, serves on the SCI Task Force.
- Bonnie Schaude, speech/language pathologist, serves on the TBI Task Force.
- Ashley Kim, physical therapist, serves on the Children and Youth Subcommittee’s SCI Work Group.
- Tracey Wallace, speech/language pathologist, serves on the Children and Youth Subcommittee’s Schools Work Group, which is working with the Georgia Department of Education on training teachers about helping students with TBI.
- Leanne Dennis, program manager of Shepherd Pathways, serves on the TBI Facilities Commission, which is working to raise awareness of the lack of neurobehavioral facilities in Georgia.
- Ginger Martin, coordinator for life coaching, serves on the committee working on personal support training for caregivers.
- Stephen Macchiocchi, Ph.D, director of neuropsychology/psychology, serves on the Sports Concussion Coalition
- Minna Hong, peer support coordinator, sits on the distribution committee that makes recommendations for distribution of funds to applicants.
“It is so wonderful to connect with people from institutions across our state who share an interest and a passion for supporting the success of those whose lives have been affected by brain or spinal cord injury.”
– Tracey Wallace, who works alongside members of the Georgia Department of Education to improve the identification of students with brain injuries, as well as how to train and prepare educators to meet their needs
“I want to be involved with the Commission because working as a case manager has shown me the serious financial burdens patients have as a result of their injuries. Although my primary goal is to prevent injuries, a great secondary goal is helping those who are hurt to get what they need.”
– Bridget Metzger, CCM, CRC, LPC, member of the SCI Task Force, which is creating an SCI prevention education campaign and researching risk factors associated with SCI, among other activities
“The Commission’s work is important because it’s the only such avenue for many brain and spinal cord injury patients to fund things that insurance doesn’t cover – transportation, home modifications and attendant care, for example. Without the Trust Fund many of these patients might wait years to fund some of these things.”
– Bridget Metzger
“I work with young people and their families every day, and it is tough to see them go through such a life-changing event. I know I am part of such a small facet of the Commission’s work. I can’t even begin to tell you how they do what they do.”
– Ashley Kim, MPT, ATC
Written by Amanda Crowe, MA, MPH
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 935 inpatients, 541 day program patients and more than 7,300 outpatients each year.