Holly Heath-Shepard guided her son through a year of treatment after an improvised explosive device in Iraq took two of his limbs and left him with a mild brain injury.
But, she says, her recent efforts to help victims of traumatic brain injuries, or TBIs, resulted not from his injuries, but from glimpses of other soldiers during the year she spent with her son at Walter Reed National Military Medical Center.
“The most heartbreaking were the ones who had no physical injuries you could see, but as they sat in their wheelchairs with their family members talking to them, trying to reach them, there was just nothing coming back,” she says.
After several years volunteering with the families affected by TBIs, Heath-Shepard was appointed by Gov. Pat McCrory to the N.C. Brain Injury Advisory Council this summer, and was immediately voted in as the chair of the group, which is exploring ways to better support victims of brain injuries and their families.
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Carol Ornitz, a past chair of the council who helped recruit Heath-Shepard, says she will be a strong advocate, with a deep understanding rooted in both the clinical world and the realities families of victims face.
While awareness of the issue has grown among state legislators and policy makers, Ornitz says, Heath-Shepard will need to use that momentum to usher in a number of improvements, starting with funding increases now being considered in the state legislature.
“It’s people like Holly that are going to make the difference in how we deal with people who need more help than they’re getting,” says Ornitz, an occupational therapist whose husband and son both suffered traumatic brain injuries. “She’s the perfect person for this next phase of work.”
Plight of others
Heath-Shepard grew up in the Midwest, and made her first move to North Carolina in 1979. She returned to the area after a brief stint in Georgia, and now lives in Rolesville.
She earned a bachelor’s degree from N.C. State University and completed a master’s degree in social work from UNC-CH while also raising her three children.
Being a social worker brought her in frequent contact with clients whose mental or physical disabilities presented challenges to their daily lives. But it wasn’t until her son was injured that she became interested specifically in TBIs. He was an army paratrooper based at Fort Bragg when he ran into an explosive devise while serving in Iraq with the 82nd Airborne.
Heath-Shepard took a break from her work to help him as a non-medical assistant during his yearlong treatment.
At first, she struggled with the “why him?” question, she says, until she realized how selfish that was.
“He had just as much a chance as anyone else over there of being wounded, and he is no more special than any other brother or son who was over there,” she says.
As she became accustomed to her own son’s condition, she began to notice the plight of other victims and families. She was particularly struck by patients whose brain injuries were far more severe than her son’s.
“Just seeing that look of despair in their faces, it was overwhelming,” she says. “I remember feeling that at some point in my life, I was going to do something about that. I was going to try to be of some kind of help.”
While she was caring for her son, Heath-Shepard came to realize how difficult it would be to deal with such a traumatic injury for families who did not have the support wrapped around the military – a place to stay, free medical care – or the financial means to care for loved ones without working.
Those are the families, she says, who most need extra support, particularly in the days after a patient is discharged from the hospital, when many still require near-constant care.
“When I see families who are struggling with the ‘How am I going to go to work today and get my son to physical therapy and pay his medical bills?’ I didn’t have those kind of stressors,” she says.
More help needed
Her first effort to help was as a consultant to a group making plans for a comprehensive support center for veterans. Though that idea didn’t pan out, it led her to her work with the Brain Injury Association of North Carolina.
She facilitates a support group that meets monthly at WakeMed for caregivers of people who have suffered traumatic brain injuries. It was there that she met Ornitz, who encouraged her to pursue a seat on the council.
For the past month, Heath-Shepard has spent many of her days meeting with legislators and state staff, sitting in on budget talks, and getting up to speed on the wide variety of issues the council will consider.
There are about 190,000 survivors of traumatic brain injury in North Carolina, according to federal data from 2012, or about 2 percent of the population. These might stem from car accidents, sport injuries, or a number of other causes.
Most brain injuries cause the victim to seek emergency care, and afterward they might be referred for any number of treatments, such as psychiatric care or physical therapy.
But many patients require more care than their families can provide, and without support, they can become isolated and depressed. Many victims, as well as their families, require ongoing care and support to deal with the long-term effects of their injuries.
“That’s what North Carolina is lacking,” she says. “For someone with a moderate brain injury, they’re going to need daily monitoring and medication, and there aren’t many services available.”
Both versions of the budget being considered by legislators include some funding to expand Medicaid coverage for TBIs, which has only been available to children, to more people.
One of her council’s primary tasks is to review whether the term “traumatic brain injury” that is now the standard to receive state support should be changed to “acquired brain injury,” which would include other types of brain injuries as well – a move that would further expand coverage.
She’d like to foster greater coordination between the state agencies that help victims and their families, closing gaps in the care and support that victims and their families receive. She’s also working to beef up the work of the council’s veterans committee.
In terms of prevention, the council is working against efforts to lower the age when children can ride all-terrain vehicles, a move that she says has been shown could likely to lead to an increase in brain injuries.
She’s also working to ensure that the state collects more accurate data on brain injuries.
“Our biggest duty is to be good advisers to our legislators so that they can make good decisions regarding matters that deal with brain injuries,” she says.
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Born: December 1959, California
Career: Licensed clinical social worker; Chair, N.C. Brain Injury Advisory Council
Education: Bachelor of social work, N.C. State University; master of social work, UNC-Chapel Hill
Family: Husband Thomas; three children and two grandchildren
Fun fact: Heath-Shepard has degrees from both UNC-CH and NCSU, yet she claims allegiance to a third local school’s sports teams: Duke University’s Blue Devils. “I just love Coach K,” she says.