Posted At Beaufort Gazette

BY : Peter Frost

Tom O'Connor sits hunched over in his electric wheelchair, shoulders slumped, head cocked to the side.

His right leg is twice its normal width. His feet are burning. He feels weak. The feeling in his right arm is 80 percent gone, and he's starting to lose it in his left.

O'Connor, 64, has advanced, progressive multiple sclerosis, a deadly, debilitating disease that attacks the central nervous system. And since moving to South Carolina from Illinois in September, he's been more than two months without the drugs that are supposed to prolong his life.

And it's all because of $20 -- the difference between the $868 that O'Connor makes in his monthly Social Security check and the $848 income cut-off point for the state's Medicaid program.

O'Connor is not alone. He's just one of millions of Americans forced to make difficult choices when it comes to their health care. For many with chronic illnesses, the decision comes down to living on their own with limited health care and drug coverage, or forego their independence -- and belongings -- to move into a nursing home to become eligible for Medicaid.

And there's no relief in sight. Rising health-care costs, particularly for prescription drugs and long-term care, have devastated state Medicaid budgets.

And with the flood of baby boomers moving into retirement age -- causing an increase in demand for long-term care and nursing homes -- the stress on the national health-care system will increase, further burdening already strapped state Medicaid programs.

When O'Connor moved to Bluffton from Chicago to be closer to family and friends and return to his former home absent of cold, hard winters, he said he was assured by the Beaufort County Department of Social Services that he would be able to transfer his Illinois Medicaid benefit with no problem.

But after arriving, he was informed by the department that he would have to move into a nursing home to become eligible for the state's benefit because his income was too high.

O'Connor, who lives at Riverside at Belfair, an assisted-living facility in Bluffton, said he didn't come to South Carolina to live in a nursing home. He's too young, he said, and he feels more comfortable with his own furniture and personal belongings.

This is where things got murky.

O'Connor, who is wheelchair-bound and legally classified as disabled, should meet a level-of-care requirement, a provision that would make him eligible for the state's Medicaid benefit, said Alicia Jacobs, bureau chief for Eligibility Policy and Oversight for the South Carolina Department of Health and Human Services. The income requirement to qualify for that provision is much higher -- $1,737 a month.

"Off the top, it sounds like he should have been able to meet (the eligibility requirement)," Jacobs said. "Income-wise, he shouldn't have a problem. And since he's confined to a wheelchair ... .

"If there's a policy not being followed, I'd certainly like to take a look at his case," she added. She said she's concerned about O'Connor's situation, and she urged him to contact her to get his problem ironed out.

Gary Ries, Medicaid deputy director of Eligibility and Beneficiary Services for South Carolina Department of Health and Human Services, also said help may be available.

"With the program, there are tough yeses and nos," he said, "but we'll do everything we can to find all of the benefits he's entitled to and get him eligible for them."

But it might be too late.

O'Connor has spent 69 days without a key drug he was prescribed, Copaxone, that could delay and suppress the progression of multiple sclerosis.

But even that drug is not an assurance that O'Connor wouldn't get worse, said Chris Ayers, of the National Multiple Sclerosis Society's Mid-Atlantic Chapter in Columbia.

Because of all the red tape, and because he thought he could no longer afford to be without his drugs, O'Connor cut ties with South Carolina and reapplied to the Medicaid program Wednesday in Illinois, where he maintains legal residence.

His coverage is set to resume Monday.

"Someone just really dropped the ball" in South Carolina, O'Connor said, shaking his head. "Somewhere along the line, the wheels fell off, and I just don't have time to sit and wait for them to get this straightened out. I need my medicine."

For situations as dire as O'Connor's -- who is two months shy of his 65th birthday, when Medicare coverage would kick in, and whose drug costs surpass $2,000 a month -- government-sponsored care is the only answer.

"I don't have a lot left," O'Connor said. "I used to have a lot of money, but after getting MS, it completely drained all of my assets."

A former entrepreneur, he operated a number of businesses in his younger years, including the former Scandal's nightclub on Hilton Head Island, which was in the building that is now Central Church. It brought national names like Bob Hope, Dick Clark, Frankie Avalon and The Platters to the island.

But everything came crashing down when he was diagnosed with multiple sclerosis about six years ago.

The day he walked his daughter down the aisle for her marriage was the last time he remembers walking without some sort of assistance. He hasn't been out to dinner at a restaurant for more than three years.

He had to sell his house and liquidate all of his investments to pay for health-care costs. Now, he's left with virtually nothing, aside from a tattered love seat, an old dresser and a dated floral bedspread.

He gets assistance from family members to pay for his $1,425-a- month room at Riverside, which provides him with access to medically trained staff, household maintenance and three meals a day.

He has trouble sleeping and even getting into his bed some nights. Using the bathroom and bathing have become a chore.

"The poker game is crooked," O'Connor said of his unpredictable illness, "but it's the only poker game in town."