Brandie Pittman had always had an 800-plus credit score. Then in just a few months she charged $60,000 on her credit cards. She took her mother’s jewelry and had it melted down for cash.
Brenda Riddell didn’t know what had happened to her smart, successful daughter. “I thought she was a good kid that had gone bad for no reason,” Riddell says. But there was a reason. At 26, Pittman was diagnosed with moyamoya syndrome, a disease that constricts blood flow to the brain. Nearly a decade later, in late 2009, a series of frontal-lobe strokes radically changed Pittman’s cognitive functioning, making her impulsive and damaging her judgment.
Riddell spent every day seeking a program that could help her daughter. She called every facility in the state: nothing. “Because I wasn’t handicapped in a physical way,” Pittman says, “they didn’t seem to want to help.”
Moyamoya is rare. But Pittman’s situation isn’t. She’s one of thousands of people in Virginia who suffer from a cruel double whammy: a brain injury accompanied by severe behavioral problems. These thousands have fallen into a gap in Virginia where no money, and almost no help, is available.
“It’s an issue that kind of consumes us right now,” says Jason Young, executive director of the Community Futures Foundation, which serves people with brain injuries.
A person can sustain a brain injury from any number of causes: a car accident, a fall, a sports injury, violence or a stroke. About 250,000 Virginians live with complications from a brain injury, which may include memory loss, physical disabilities, changes in personality or psychiatric conditions such as depression.
Most of them figure out ways to adapt, and many get help from state-funded community programs. A small number of people, however, emerge with symptoms that make them unable to live alone. They may assault others, or hurt themselves. They may be unable to control their anger.
For the thousands of people who have severe problems, there are 20 beds available in Virginia that offer intensive neurobehavioral treatment. This treatment may cost around $500 per day — that’s $180,000 per year — and isn’t reimbursed by Medicaid or private insurance.
The state knows there’s a problem. “There is virtually no system of care in the community for people with behavioral problems who do not have the financial resources to pay for private care,” the state’s Joint Legislative Audit and Review Commission found when it studied the issue of access to services four years ago.
Nursing homes may take them, but a place designed for the elderly is rarely a good fit for someone who’s physically able and unpredictable. In one case study cited by the commission, a man was admitted into the Alzheimer’s lockdown unit of a nursing home. He picked the locks and escaped.
Local hospitals will take people with brain injury-related crises, but Medicaid will typically pay for just a short stay. State institutions may take them, but typically don’t meet their needs, advocates say. Others end up in jails or prisons.
If an individual with a brain injury and severe problems gets rejected from every Virginia nursing home, then the state, in some instances, will pay to send that person to a program in Massachusetts.
What’s really needed is a publicly funded residential treatment program in Virginia, advocates say. Although a complete cure isn’t possible, says Anne McDonnell with the Brain Injury Association of Virginia, “we know that folks with adequate, early intensive rehabilitation have better outcomes than folks who don’t get that.”
After the commission’s report was released, state and nonprofit experts convened to figure out what to do. In 2008 the Virginia Brain Injury Council made a few recommendations. One was that Virginia start a brain injury Medicaid waiver program, which would allow people with severe impairments to receive care paid for by the federal government. The group also recommended a state pilot program, spending $8 million to provide services at varying levels for 100 people.
It isn’t cheap. But already, the state is probably spending more than that to serve brain injury patients in its institutions and correctional facilities, McDonnell says. Some researchers estimate that as much as a quarter of the prison population nationwide has suffered brain injuries.
The question now is, when will things change?
In Virginia, people with brain injuries historically have been overlooked because it’s politically expedient, says Dr. Greg O’Shanick, president of the Center for Neurorehabilitation Services in Richmond. The same thing happened nationwide, O’Shanick says, “until we got to the issue of wounded warriors.” Brain injuries have become the defining wounds for Iraq and Afghanistan veterans. Now, denying them treatment has become “a consummately unpatriotic thing to do,” O’Shanick says.
After months of searching fruitlessly for a program to help her daughter, Riddell was ready to give up. Then she found a specialist who put Pittman, now 37, on medication that has curbed her impulsivity and behavior problems.
In the last month, she’s improved immeasurably, Riddell says. Her daughter is regaining some independence and old hurts are healing. Riddell even asked her daughter why she took the jewelry that meant so much to her.
“Mom, I can honestly tell you I don’t know,” Pittman said.
Pittman says she’s making plans to rebuild her damaged credit and buy a house. Riddell, 59, has stopped looking for a residential treatment program for her daughter. If things again change for the worse, she says, she’s willing to consider becoming a full-time caretaker. “I absolutely will do it,” she says. “But for me to do it because it’s a failed system? I’ve got a problem with that.”