Arnel Reynon illustration
At 16, Joshua Perkinson was an honor student and the captain of his high-school track team. His younger sister, Sarah, was on the team, too, and according to their mom, regarded her big brother as a best friend.
"He was kind of every parent's dream kid," says his mother, Joanne Perkinson.
But on March 21, 1999, that all changed in ‚Ä®an instant.
Joanne says it was never exactly clear what happened that day, except that the vehicle Josh was driving was broadsided by another car.
The high-school junior was taken to Virginia Commonwealth University Medical Center, where doctors offered a grim assessment.
"They didn't think he was going to make it at all," his mother recalls.
Josh had experienced severe head trauma, what Joanne describes as a "brain-shearing" blow to the head from the impact of the crash.
Within 48 hours, Josh underwent surgery to relieve the swelling in his brain. The procedure kept him alive, but it was still touch-and-go.
"After a week, they gave us a guarded 50-50 [chance] that he would live," Joanne says, "but if he survived, he would never walk or talk."
Today, Josh is 26 and doing both of those things. And though his progress is light-years ahead of what doctors expected, Josh still faces challenges on the road to becoming an independent adult.
In the 10 years since his accident, Josh has received rigorous rehabilitation and therapy to help him regain even the most basic life functions. He had to relearn how to breathe, how to swallow, how to walk and how to talk.
Joanne Perkinson says her son's extensive rehab has required her to be a dogged advocate in dealing with state agencies, insurance companies and health-care providers. And compared to most people caring for a brain-injured family member, Joanne has a leg up: She is a special-education teacher for L.C. Bird High School with a master's degree in her field.
The Perkinson family offers but one glimpse into the world of brain injury and the fact that insurance, services and information can be hard to manage for families of loved ones with long-term needs.
"It's a really pervasive disability that not a lot of people understand, in part because it goes by a lot of different names — concussion, shaken-baby syndrome, domestic violence," says Anne McDonnell, executive director of the Brain Injury Association of Virginia.
Brain injuries can be divided into two broad categories: traumatic brain injury, resulting from a jarring of or blow to the head, and acquired brain injury, which can be the result of a stroke, an aneurysm or a tumor.
While many mild brain injuries may go undetected, severe brain injuries can create complex, long-term problems, as in Joshua Perkinson's case.
Brain injuries are the leading cause of death and disability for anyone under the age of 45, McDonnell says. She estimates that approximately 150,000 Virginians are disabled by a brain injury. "That doesn't include the hundreds of thousands who aren't disabled," she says, "but who may experience problems related to a concussion, for example."
Most families are ill-equipped to deal with the host of issues that come with a complex brain injury. The many services needed for someone like Joshua Perkinson are extensive and expensive.
The Perkinsons were fortunate to have insurance through an employer to cover many of the catastrophic costs at the time of Josh's accident. His 17-day stay at VCU Medical Center after the accident cost about $250,000, his mother says. Because of his age and dependent status in his parents' household, Josh didn't qualify for any Medicaid assistance until he turned 21 years old. And typical health-insurance policies don't cover the type of long-term costs that come with a brain injury.
Today, Josh's Medicaid benefits help cover the costs of seven different medications he must take to mitigate seizures and other chronic problems. Some of his medications can cost $700 a month. Add to that the Botox injections — about $3,500 every three months — that he receives to help rehabilitate his damaged right arm and hand.
Joanne Perkinson has managed to navigate the health-care matrix on her son's behalf, but many families are not as fortunate.
This is why the Brain Injury Association of Virginia has lobbied state legislators for the past five years to extend Medicaid benefits to cover more than just limited services. After the last session, McDonnell says, there is the political willingness among legislators to do so — but not yet the budget.
Dr. Nathan D. Zasler is the medical director of Tree of Life, a 10-year-old company that provides rehabilitation services (known as "neurorehabilitation") and assisted-living programs for people with brain injuries.
In October, Tree of Life opened two assisted-living group homes to cater to brain-injury patients who need extensive care and services.
Tree of Life offers a level of care that is not typical and not inexpensive, Zasler notes — most of his patients are referred through workers' compensation, one of the few ways to afford such care. The services include 24-hour expert staffing, including access to Zasler and other physicians.
Ultimately, Tree of Life aims to take patients whose injuries are just as complex as Joshua Perkinson's and help them recover enough to move home and live in the community at large, Zasler says. The doctor notes that brain injuries create a host of issues: Patients may have pain-management problems, psychosocial issues such as "disinhibition" and severe memory loss, to name a few.
With Tree of Life, Zasler has created a model that he wishes were more prevalent in the health-care market at large, but he notes that the market's focus on controlling costs has caused brain-injury services to become fragmented and to put the best evidence-based medical practices in the back seat.
"Our model emphasizes helping people to make potential functional gains even years after injury," Zasler says.
Joanne Perkinson is familiar with Tree of Life and says she considered the services for her son but didn't have the right resources to cover the costs. Nevertheless, she and her husband stay committed to Josh's progress.
In December 2008, Josh was finally cleared to get another driver's license — an event that Joanne didn't think would ever happen again, given the many physical and mental limitations from his injury. Josh still lives with his parents, and though he has redeveloped many functions, Joanne wonders if he'll ever be able to live independently.
She also wonders how he will get services if she and her husband can't get them for him.
"When I can no longer do this, who will?" she says. "And I hate to think about that."