Double amputee without health insurance must use ER for medical care

From the Belleville News Democrat in Illinois:

BELLEVILLE, Ill. -- Jennifer Moore (pictured) was 15 months old when surgeons at the Shriner's Hospital in St. Louis amputated her disfigured left leg below the knee. Three years later they did the same thing to her right leg.

As if being a double-amputee wasn't enough of a challenge, Moore, 21, has battled a host of other birth defects, including an upside-down kidney and a blocked urethra, the tube to her bladder, making her susceptible to kidney infections.

What's making her struggle even tougher, though, is the fact she can't find a job.

Which means she can't get health care insurance. Which means she doesn't have a primary care physician.

So when Moore gets sick -- which is often -- her only recourse is to spend hours waiting in hospital emergency rooms for a doctor to see her.

Moore's inability to get insurance illustrates what, in the view of many experts, is one of the Illinois health care system's biggest Catch-22's. It's a coverage gap that has left tens of thousands of men and women in medical limbo.

To qualify for the state Medicaid program, the federally funded insurance plan for the poor, childless adults such as Moore must first be certified as disabled by the federal Social Security Administration.

The problem is, despite Moore's many physical disabilities, the Social Security Administration has deemed her physically capable of work.

So the administration denied her application more than a year ago.

Three weeks ago, Moore woke up in the middle of the night, doubled over with severe stomach cramps. She began vomiting.

Rushed to St. Elizabeth's Hospital in Belleville, Moore spent the rest of the night in the ER waiting, where her problem was diagnosed as gastritis. The bill for her visit: more than $12,000. Moore, who lives with her mother and grandmother in rural Belleville, has been without insurance for three years -- since she turned 18 and grew too old for the coverage she had received under her mother's employer-based health plan.

Since then, Moore figures she's been to emergency rooms in the metro-east and St. Louis area nearly three dozen times.

"The doctors all look at you like you're crazy," Moore said. "'Why don't you have a primary care physician?'"

Meanwhile, she's accumulated a mountain of medical debts she can barely comprehend.

"It's terrible," Moore said. "Sometimes I'm afraid to open the mail."

Moore's been waiting more than a year for a chance to appeal the Social Security Administration's decision before an administrative law judge -- a situation made worse by a flood of new disability applications from newly jobless middle-aged workers, said Tom Yates, a spokesman for Health & Disability Advocates in Chicago.

The agency that reviews Social Security disability claims in Illinois has seen a 100 percent increase in initial claims, Yates said.

"There are huge backlogs right now," he said. "I suspect a lot of older workers have gotten laid off in this recession. And they got nothing else. They're applying for disability on the basis of you name it -- their back, diabetes."

And until her appeal is approved, Moore remains ineligible for Medicaid coverage.

Moore said she doesn't understand why she should be excluded for insurance coverage -- or why her only hope for contact with a physician must come in the form of costly ER visits.

"I was born like this," said Moore, who, after many years of walking on her hands, has the V-shaped back and thick arms of a gymnast.

"I can't really help it," Moore said. "That's what I thought the system was in place for, people like me. But it's not proving that way at all."

The problems facing Moore are "incredibly common," said Susan Simone, a senior staff attorney at the Land of Lincoln Legal Assistance Foundation, in East St. Louis. "It's a nightmare for people."

Simone said she has at least 10 clients in Moore's situation.

"So that whole group of (age) 18 to 64, single adult, are between a rock and a hard place," Simone said. "Especially if they are poor. And because the Social Security system takes so long to get a decision at the hearing level, these people are waiting two years."

Nationwide, nearly 40 percent of adults between the ages of 18 and 34 lack health care insurance. And nearly 28 million of the 47 million Americans without health insurance hold either part-time or full-time jobs, according to the latest U.S. Census Bureau figures.

In Illinois, at least 400,000 low-income adults can't obtain Medicaid coverage because Social Security won't certify them as disabled, said John Bouman, president of the Sargent Shriver National Center on Poverty Law in Chicago.

The medical problems these adults face, and the huge hospital bills they rack up, make a powerful case for universal health care coverage, Bouman said.

"The problem is they don't have a doctor, or ongoing primary care," Bouman said. "Then every little problem they have has to wait until it's an emergency. That's why health care reform actually saves money in many ways. You avoid all these acute care episodes in hospitals."

The main Senate and House health care reform measures being debated in Congress would extend Medicaid eligibility to adults who earn 133 percent of the federal poverty level.

Another reform would decouple Medicaid eligibility from the need to be certified disabled by Social Security.

"So you'd really be looking at someone's income level, not really other factors," Yates said. "And if you think about it, policywise, that's the right thing to do, to divorce medical coverage from disability payments."

The Social Security Administration is taking steps to ease the backlog of pending cases, said Andrew Salata, an administration spokesman.

"What we have done over the last couple of years is we've added more enhancements to streamline the process," said Salata, noting that "everything is handled electronically in our office."

During 2010, the agency plans to open 14 new hearing offices across the nation, including five in the six-state region that includes Illinois, Salata said.

And since June, the agency has hired 148 administrative law judges and 850 support staff, he said.

As for Moore, she remains hopeful that either health care reform will be passed by Congress or Social Security will approve her disability claim.

With health care insurance, Moore would have a primary care physician, who'd make sure that "I wouldn't have to go and spend six hours in the emergency room every time there's something wrong with me," she said.

Moore emphasized she wants to finish her education and find a job. She remains upbeat about her prospects.

"I always have to look at it like tomorrow will bring something else. God has always taken care of me," she said. "I know that this is not going to be like it is forever."