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Brain injury aftermath: Family struggles as loved one is shuffled from hospitals

On a sunny morning almost one year ago, Kurt Cleveland strapped three Easter baskets to the back of his Harley-Davidson.

He left his Marengo home and headed to Crystal Lake for a visit with his daughter and grandchildren on the holiday.

He never made it home.

On his way back, Cleveland lost control of his motorcycle, and the otherwise robust 49-year-old suffered a traumatic brain injury that has left him a shell of the man he once was. He wasn't wearing a helmet.

His family has spent much of the past year trying to cope with the debilitating head trauma Cleveland suffered in the accident.

Cleveland had a steady job, but his employer did not provide insurance, so for the past year he’s been shuffled to and from eight different hospitals and nursing homes. He went on government-supported insurance after the accident.

Once the hospitals learn of his insurance situation, or the state is not paying its Public Aid bills on time, Cleveland is out the door, said his longtime girlfriend, Veronica Green.

With the right kind of care, people who suffer terrible head traumas can make remarkable recoveries. But what are people in Cleveland’s situation to do?

“What really gets me is Public Aid said they will feed and house him for life, but they won’t rehab him,” Green said.

Medical facilities also are feeling the Public Aid pinch. For patients who are uninsured or are self-paying, hospitals such as Advocate Condell Medical Center and Loyola University Medical Center will see whether the patient is eligible for charity care. Nonprofit hospitals must offer a certain level of charity care or risk losing their tax-exempt status.

Medicaid payments are behind, and hospitals are paid about 75 cents for every dollar of care provided, said David Cartwright, vice president of finance at Advocate Condell.

“We’re not getting paid anywhere near our costs, and further, the state has significantly delayed payment to us to help it balance its budget. This creates budget and cash flow pressures on hospitals that care for Medicaid patients,” Cartwright said.

Late payments create a cash flow problem for hospitals, and often those problems result in a trickle-down effect as medical facilities look at other revenue streams to make up the difference.

‘An absolute nightmare’

In the past year, Cleveland has been to eight different facilities from the south Chicago suburbs to Wisconsin.

He’s logged 1,000 miles in ambulance rides.

The quality of care he receives is deplorable, Green says, compared with what someone like U.S. Rep. Gabby Giffords – who made remarkable gains after suffering a gunshot wound to the head – was able to achieve.

“I don’t understand why there is so much red tape and hoops that families have to jump through just to get the help they need,” Green said.

Cleveland needs intensive physical therapy, but he’s not progressing, so insurance won’t cover it, his family is told.

“It’s been an absolute nightmare,” said Cleveland’s sister, Erika Pietrarosso. “He could have been much farther along than he is. He’d probably be home right now if therapy continued.”

Cleveland received medical treatment at Advocate Condell Medical Center. His family was seeing gains in his progress when he was at Lakeview NeuroRehabilitation Center in Waterford, Wis., before he went back to Advocate Condell to get a metal plate in his head and was not allowed back. He now is at Alden Park Strathmore in Rockford.

Since his surgery, Cleveland’s muscles have weakened as he lies in bed. His family clings tightly to videos they took of him walking and talking during his brief stay at Lakeview.

“He’s stiffening up because he’s not getting the movement [he needs],” Pietrarosso said. “It’s awful to see. He shakes when he moves because he’s so weak.”

The first year after a brain injury is crucial for those with a traumatic brain injury.

“A lot of the first year is really finding out what strategies you need to put in place to compensate for losses that they’ve incurred as a result of their injuries,” said Mary Lou Philbin, traumatic brain injury service manager at Pioneer Center. “The earlier the treatment, the better. But I think rehabilitation is an ongoing process, and you continue to make gains for years.”

The Pioneer Center and Family Service offer traumatic brain injury services. However, a lot of the programming is geared to those who are further along in their progress.

“Once they’re stable enough and ready to be reintegrated back into their homes, that’s where we come in,” said Tammy Stroud with the McHenry County Mental Health Board.

Both Pioneer and Family Service offer case management, rehabilitation, and support services for family and clients. Funding for these programs comes from the McHenry County Mental Health Board.

“Once they do start to make some progress, they need to continue on that path because there can be slippage and they can revert back,” Stroud said.

‘I want him back’

It was about 3:30 p.m. April 24, 2010, when Green got the call from Cleveland’s sister. Green was preparing Easter dinner and was running behind, oblivious to the events that had unfolded on Cleveland’s way home.

“When his sister called me, I thought I was late,” Green said. “I didn’t know anything was wrong. [Pietrarosso] said, ‘You need to drop everything and come down here.’ I didn’t even make it in the door, and his sister was crying.

“At first when I saw him, I told the doctor they had the wrong guy,” Green continued, her voice quivering as she held back tears. “It didn’t even look like him. I didn’t know it was him until I saw the tattoo on his arm.”

Doctors at Condell performed emergency surgery and took a large chunk of skull out of Cleveland’s head to reduce the swelling.

There were little signs of the once vibrant man in the Rockford hospital room where Cleveland recently was being treated for a case of pneumonia.

Motionless in his hospital bed, Cleveland’s bright blue eyes locked with those around him and bounced from person to person. At times his gaze drifted to a far corner of the hospital room, or his eyes closed altogether.

“Focus, focus, baby. Can you focus on us?” Green urged him over and over.

Pietrarosso took a gentler approach, stroking his hand, checking his feeding tube and IV lines, and adjusting his pillows.

“I want to hear him talk,” Pietrarosso said. “Because I want to know what he thinks about all this that’s been going on.

“I want him back, that’s it. I want him back,” she added. “I know he’s in there. He just needs help getting out.”

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