Trust fund getting off the ground?

Brain and spinal patients losing patience

In 1998, Georgia voters passed a ballot measure that tacked on a 10 percent surcharge to all the DUI fines handed out in courtrooms across the state. The money from those surcharges was to establish the Brain and Spinal Cord Injury Trust Fund. The idea was to provide some rehabilitative assistance to people who have suffered a brain or spinal injury. The money would come from drunk drivers — fittingly enough since traffic accidents, DUI-related and otherwise, cause about half of all such injuries.

Since then, almost $2.4 million has been raised for the fund. An authority has been created to oversee the fund and Janice Cagnazzo was hired last November as executive director.

"Things are beginning to move," says Cagnazzo, conceding some early confusion as to who, exactly, was supposed to be collecting the additional fees. Further hampering progress is a plan to transfer the state Division of Rehabilitative Services — which includes the authority — out of the Department of Human Resources and into the Department of Labor.

"I was only hired last November," she says. "We are still a startup, but we're moving forward. ... We're making progress as we speak."

That's all well and good, say some members of Atlanta's disabled community, but they're beginning to wonder whether anything's been done. Mark Johnson, a local disability advocate, says he's seen nothing to indicate any movement.

"I know Janice, and I think she'll do whatever she can," Johnson says. "But she's been on board seven months — how long does it take? Is there an office? Is there a website? I don't think Janice or the authority are [delaying] anything intentionally, it's just not being made important enough higher up the food chain."

In fact, there is no office or website yet. And frustration, say some, is growing among the folks waiting — often quite desperately — for some relief.

And those needs are pressing. According to the Brain Injury Association of Georgia, some 48,250 Georgians are treated for traumatic brain injuries each year; about 2,100 of them sustain permanent disabilities.

"People with brain injuries are generally wiped out financially by the cost of medical care, and then they face a lifetime — or very long period of time — when they'll need services and support," says Gloria Stahle, an authority board member and outgoing president of the Georgia Brain Injury Association.

One of those able to testify as to just how vital those services can be is former Atlanta Police Officer Pat Cocciolone, also an Authority board member. She was front-page news here in 1997, following a Buckhead ambush that killed her partner, Officer David Sowa, and left Cocciolone with brain injuries. Subsequent treatment has allowed her to regain her ability to speak — other than occasional difficulty finding particular words, her conversation seems normal — but she still can't read, and must have assistance to perform many daily chores. Cocciolone, too, says the need for help is real, and growing.

"There are so many people who are hurt every day," she says. "People that don't have the services they need; there are all kinds of things we need to help people with." She cites herself as an example; without weekly sessions with a therapist, she says, "I wouldn't be able to talk to you right now." But, unlike Cocciolone, many of those living with brain and spinal cord injuries don't have insurance. "When people lose their jobs, what're they supposed to do?" she asks. "I mean, I'm pretty lucky, but what about others?"

And for the many who eventually go broke and find themselves on Medicaid, the shortage of services is compounded by strict rules limiting a recipient's outside income.

"On Medicaid, they can only earn a small amount of money," says board member Justin Pressley, a spinal injury patient in Gainesville. "Unless you want to just sit home and watch TV, you can't make more than $500 a month, unless you're able to get on a waiver program."

A key aim for the trust fund is to provide support services for those who are unable to get them otherwise, says Stahle.

"Only 20 percent of the people who survive brain injuries will get the services they need," she says. Trust funds have been established in 11 states as "a source of last resort for people who are unable to get the services any other way."

Like virtually everyone contacted for this story, Stahle also says the delays have been frustrating. DHR spokeswoman Lola Wilkenson says confusion over the transfer of services from her department to Labor was multiplied when a mix-up transferred the fund's money to Labor this year, but left the authority under DHR until next year.

"It has been confusing," she acknowledges. Nonetheless, she's able to account for every penny paid into the fund: $2,394,771.59, as of May 16.

"We've been having a lot of problems with state red tape," Pressley says. "But it seems that we've made progress to eliminate some of the problems."??