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By Thomas Goldsmith
On Jan. 28, 2013, the Irby family of Burlington found their way of life forever changed.
That was the day that son Zack Irby, at 23, rear-ended a truck on Interstate 85, crumpling his Ford Focus and suffering injury that sheared every nerve from his body to his brain.
After he was airlifted to Wake Forest Baptist Medical Center in Winston-Salem, Zack and his family – mom, dad, two sisters — began a journey that has occupied them since, and likely will do so for decades. Their web of friends, work, family activities, sports, music and deep Christian faith has splintered or changed in unexpected ways.
“The family that we were prior to Zack’s accident no longer exists,” Jeannie Irby said at their home outside Burlington. “We have died to our church, we have died to our families, we have died to our friends. And somehow I muster up enough strength to get out of bed and keep fighting.”
At the heart of the dilemma for Jeannie and husband Jack Irby, 51, are government, hospital and insurance company policies and practices that tend to abandon full-scale rehabilitation efforts for people with traumatic brain injury, called TBI, after 60 days. State DHHS figures show that more than 200,000 people in North Carolina are living with the effects of long-term brain injuries.[pullquote_right]Zack has been in and out of hospitals in a dizzying journey since January, 2013[/pullquote_right]Many patients are sent home when insurance runs out, lacking the amount of support needed to look after people with severe disabilities. Others are placed in skilled nursing facilities where they have their physical needs met, but receive little or no rehabilitative therapy.
“Most people depend on programs that are funded by state dollars and there’s not much there,” said Jean Anderson, 59, of Stanly County, whose son Sam also deals with traumatic brain injury stemming for a car crash.
“And it’s hard. What ends up happening is that families cobble together whatever they can.”
Zig-zags of treatment harm recovery
A sports-loving, active young man who worked as a courier, Zack retains the ability to talk and joke with his family. He’s a paraplegic who uses a wheelchair to get around and needs help with bathing, grooming and eating. He can hold conversations, but can sometimes be a little hard to follow.
“I worked in sales…,” he said. “I am as smart as someone who has graduated from Harvard.
One problem is that the devil is trying to keep me handicapped.”
Around the July 4 holiday, Zack, 27, had another in a history of dozens of physical setbacks. He contracted pneumonia, something that happens frequently to people who don’t move around much, and returned to Alamance Regional Hospital in Burlington, where he has been a patient before. But during a reporter’s visit to the Irby’s home in late June, Zack was moving around the house in his customized wheelchair, alert, aware of visitors and talking volubly at times.
He’s a commanding presence whose condition led to the creation of Team Zack, a group of fellow church members, relatives and friends who have supported him through visits and prayer.
“In this world I’ve overcome a lot and I always rise to the occasion,” Zack told this reporter. “I always rise above.”
TBI needs exhaust resources
Jack Irby continues to work as general manager of a Ford dealership, as well as taking a major role in Zack’s care. Jeannie and sister Meghan, 29, spend countless hours feeding and grooming Zack, looking after his medical needs which include helping with his exercise, maintaining his feeding tube and administering a plethora of medications, bringing supplies from his large, pantry-like medical closet, and maintaining the $100,000 room the family built to meet his needs. During the past four and half years, Jack Irby said, the family has spent hundreds of thousands of dollars out of pocket for Zack’s care.
Through the Medicaid CAP/DA (Community Alternatives Program for Disabled Adults), which receives state and federal funding, Zack receives 50 hours a week of help from a home care aide. It’s appreciated, but still leaves 118 hours a week where the job of looking after Zack returns solely to the family. That includes being available if Zack awakes with a problem in the middle of the night.
The Irbys have have received some assistance from Blue Cross Blue Shield, Medicaid and other private and state programs. What’s lacking is an overall, coordinated care plan that would allow a myriad of providers to work together to the greatest effect. That need was identified in a report to the U.S. Congress last year from the Centers for Disease Prevention and Control:
“..an imperative for those in public health practice, clinical practice, and research is to design and evaluate effective strategies to mitigate the health effects of TBI,” the report said. “Maintaining a comprehensive and coordinated system of rehabilitation interventions is critical to achieve this end. Substantial progress has been made in identifying effective rehabilitation interventions after a TBI, but considerable work remains to be done.”
Following the accident, Jeannie, now 47, left her job as a health-care office manager to become a full-time caregiver, as well as a strong advocate for Zack and, increasingly, other people with traumatic brain injury across the state.[pullquote_right]Keep up with Zack Irby and family[/pullquote_right]Her background meant that she hasn’t been afraid to confront doctors, nurses or insurance companies if she didn’t receive the answers she needed about her son’s care — to “class” her way out of it — in her words. On the other hand, she also knew that bonding with people was crucial, becoming more than just another voice on someone’s phone.
“I never had that intimidation,” she said. “I learned early you’re not going to get know people without networking.”
Since the day of Zack’s crash, the Irbys have lived in a world of meeting his medical, social and psychological needs, while dealing with a medical system of difficult, bewildering practices and policies.
“We were thrust into it,” Jack said.
The accidental activist
Jeannie is now pushing for legislation at the state and federal levels that would require people with TBI to receive intensive rehabilitation as soon as possible, to mandate that hospitals have trauma caseworkers and to create a registry of traumatic injuries.
“One reason DHHS can’t fund this is because there’s not data,” Jeannie said.
Along with her care of Zack, Jeannie has gotten involved for change. She’s worked with the nonprofit Brain Injury Association of North Carolina, testified at legislative hearings at the North Carolina General Assembly, written to senators and congressmen at every level, and had conversations with state officials from state Health and Human Services Secretary Rick Brajer on down.
Part of her witness has been telling the partly harrowing, partly uplifting story of Zack’s journey through the health-care system. Through the network of people involved with traumatic brain injury issues, she said, she encounters people in worse conditions than theirs.
“Some of them just give up,” she said. “And these individuals wind up in nursing homes, and either the person dies, or the person gets lost and they are in nursing homes in the rest of their lives.”
Another Jean faces life and son’s TBI
Jean Anderson, looking after her son Sam in Stanly County, shows up at advocacy events with Jeannie Irby so often that they are referred to as “the two Jeans.” Anderson laughingly recalled the pre-accident Sam as a “pain in the neck,” always on the go, attending Stanly Community College with a plan to earn enough money with a welding business to transfer to a four-year state college and earn a degree in biology degree. That was before he ran off the road in a single-car accident, ten years ago at age 19. Said Anderson: “It wasn’t the original accident, it was all the complications afterward. Infection and all of that sets in. Some people have embolisms. Sam had a real serious stroke and meningitis.”
But, like Alamance County, Stanly County is not part of the four county pilot program to help patients with TBI.
Anderson and her husband Dale, 60, could send Sam to a nursing home, but they say home is a healthier environment, a place where their son has his own modified bedroom and a sunroom to sit in, part of the family. Meanwhile, Anderson has fought on, hoping to improve his lot and that of other families, present and future, who deal with a brain-injured relative.
“It’s kind of a club nobody wants to join,” she said. “When you’re not in it you’re not aware of anything going on. And then you think there will be all these services and supports, and there’s nothing there.
“You’re just kind of dumbstruck.”[box style=”2″]This story was made possible by a grant from the Winston-Salem Foundation to examine issues in rural health in North Carolina. [/box]