Brain injured hope to escape service limits

Craig Minnix goes out a lot -- to a movie or a local festival with fellow patients who have suffered traumatic brain injuries.

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"I just know he's never home," joked his advocate and sister, Cindy Saylor.

He's in the day program offered through Walton Rehabilitation Hospital. It's partly paid for by a state fund for brain injury patients but is also paid for by his family. They've paid for much of his rehabilitation since his accident in 1996, even though he had insurance at the time.

His case illustrates why some brain injury advocates are supporting a health care measure that could be passed by the U.S. House of Representatives this week. They point to the measure's bans on denying coverage for pre-existing conditions and discrimination on the basis of health status, as well as an end to lifetime limits on services provided.

"The elimination of lifetime caps is hugely important to people with brain injuries and frankly any kind of catastrophic injury or illness, because these costs can mount up," said Susan H. Connors, the president and CEO of the Brain Injury Association of America.

With Minnix, that limit was quickly reached and the family ended up having to step in to get him the care he needed, Saylor said.

"We had to have fundraisers and raise the money to pay for it," she said. "If we had not done that, then he would not have gotten the rehab."

It's like that with many who call the Brain Injury Association of Georgia, said service coordinator Jane Jackson.

"For some people it would make all of the difference in the world because some of them require that (lifetime of therapy)," she said.

Her husband, Waring, sustained a brain injury 12 years ago during a low-speed motorcycle accident and he requires ongoing neurobehavioral therapy for things such as depression and angry outbursts.

The Georgia Brain and Spinal Injury Trust Fund is covering his therapy for now, Jackson said.

"Eventually when that runs out, whether that's five years down the road, I don't know what we'll do," she said. "We'll just have to find a way to pay for it because it's important."

Another key element in the health reform bill is that rehabilitation is included as an essential benefit for health plans offered through the insurance exchange, Connors said. One of the reasons many brain injury patients end up on Medicaid and Medicare is they are initially denied rehab by insurance companies, they can't work and they lose their jobs and the coverage they had, she said.

"It's the deny and delay game that private insurers play that ends up creating such a massive demand in the public system," Connors said. "They delay and deny care until they are no longer responsible."

Even when a brain injury patient lands on Medicaid, there is great variability across the country about what services they can receive, she said. South Carolina Medicaid, for instance, doesn't cover post-acute injury rehab, said Joyce Davis, the executive director of Brain Injury Alliance of South Carolina.

The South Carolina Department of Disabilities and Special Needs does cover some rehabilitation for brain injury patients but it is allocated about $1.6 million a year and a study found the need is about $11 million a year, she said.

"That didn't serve that many people," Davis said. Still, she takes the calls for help and tries to direct them to what resources are available.

"It is really tough," she said.

That's why Connors and the brain injury advocates are closely watching the progress of the health care reform bill.

"I'm keeping my fingers crossed," she said. "We're hopeful."