Health Care

Wheeler: For the severely disabled, Medicaid both helps and hinders

Jonathan Greeson would like the chance to be the next Warren Buffett.

He would love to use his hard-earned degree in business management from N.C. State University to make some money, pay some taxes, accumulate some wealth.

He would cherish the opportunity to buy his mother a car.

But to keep his Medicaid coverage, Greeson must stay poor.

Greeson, 30, has Spinal Muscular Atrophy, a degenerative motor-neuron disease that has left him incapable of taking care of his most basic needs. He has never walked, and he learned to use an electric wheelchair before he was 18 months old.

Given how often he has been critically ill and unable to work, Greeson is unlikely to find a full-time employer willing to take a chance on him. Last year, he was in the hospital fighting pneumonia, among other things, from October to December.

It was the fourth time that Vance and Connie Greeson nearly lost their son.

The medical bills from that ordeal topped $500,000. Even if Greeson could afford to buy private health insurance, no one would sell it to him.

Greeson does retain health insurance through his father, who negotiated the continued coverage as part of a severance package when he got laid off, but the family lives in perpetual fear of losing it.

That’s why they and other families of the disabled hold onto Medicaid with both hands. When every illness has the potential to be catastrophic, they simply can’t risk going one minute without coverage.

“I’m not begging for more free money,” says Greeson, who works part time from home as a budget analyst for the Wayne County 4-H. “I’m begging for the opportunity to make money and pay taxes just like everyone else, with a little protection in case my health lets me down.”

What Greeson would like to do is become a financial adviser and to use his earnings to day trade on the side.

“I’ve always enjoyed money and the financial part of business,” he says from his home in Pikeville, where he lives with his parents about an hour southeast of Raleigh. “I’m in here all day watching the financial news. I’m really a dork.”

No stopgap measure

The poor and disabled are eligible for Medicaid automatically when they qualify for Social Security’s Supplemental Security Income payments. The two are inextricably entwined. If a recipient accumulates more than $2,000 in his name or starts making too much money, he can lose SSI eligibility – and there goes his Medicaid.

Brian Simpson, a wonderfully helpful Social Security specialist in Raleigh, told me there is in fact an incentive program that helps people work toward financial independence while maintaining Medicaid coverage. The hope, presumably, is that the working poor will eventually be able to obtain insurance through an employer or buy it themselves.

Neither of those scenarios is likely for the severely disabled, even though Greeson would love to earn more than the $700 he gets in disability each month and let the government keep its money.

“The problem is that Medicaid by definition is for the poor, not for the disabled,” says my best friend, Cindy Schaefer, whose son, Kevin, also has been severely disabled by SMA. “What if they get a job, and lose their job, and then lose their insurance with their job. There’s no stopgap measure.”

Kevin Schaefer began receiving disability payments and Medicaid benefits when he turned 18 in October, but he also will remain covered on his father’s insurance until age 26. Next month, he will start his freshman year at N.C. State with hopes of getting a degree in English and film studies. His goal is to be a producer or screenwriter, though he also talks of teaching at the college level.

That the system conspires to drown the dreams of those whose lives are already so difficult is unbelievably sad.

“They’re physically disabled but still quite able to contribute to society if given the opportunity, if given the help and the right tools,” Cindy says. “You’re not dealing with someone who doesn’t have the cognitive ability, and they don’t want to sit around and do nothing, which is what the system almost forces them to do.”

Where to start

Greeson has drafted and sent to numerous lawmakers (who have ignored him) an elaborate essay on how to structure a system that would allow the disabled to earn money while keeping the Medicaid safety net. It’s a system into which he would gladly pour some of his own earnings if only he were allowed to have them.

“The first thing would be to raise our limit on wealth accumulation, and then you need to promote to people with disabilities that they can make money and use that money to take care of ourselves,” he says.

The irony of having a program for the poor that ties the hands of those willing and desperate to contribute can’t be lost on many.

“I have too much drive to sit here,” Greeson says. “The only thing holding people like me and Kevin back are the rules.”

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