Many fall into a limbo where they can't work, but Medicaid won't help them.
CHICAGO -- Lucy Goodlow hurts every day. It's a sharp pain that slashes across her lower back and down through her left leg, like a knife. It's the kind of pain that makes it hard to concentrate, difficult to sit, stand or walk -- and impossible to work.
Because this pain wouldn't go away, Goodlow lost a longtime job.
Because she couldn't work, she stopped getting health benefits.
And with no insurance, it's been months since Goodlow has had physical therapy or an injection of pain medicine. There's no money for that now.
Goodlow is among millions of disabled adults who find themselves acutely vulnerable when their health fails. Ejected from the work force, stripped of health benefits, snared in the bureaucracy of government programs, they are least able to get help at the time they most need it.
"It's like, you work a person down to the ground and then refuse to help them in the end when their body gets broke," said Goodlow, 58, who had worked for the Tootsie Roll factory, where she had good health benefits, for 37 years.
Estimates vary, but experts suggest that as many as 4.5 million adults are disabled and uninsured. Causes of disability vary, from a catastrophic event such as a stroke or an accident like a car crash to a medical condition such as lower back pain or arthritis that worsens significantly over time.
Losing a job and health benefits compounds the effects of these health crises. Without help, many people like Goodlow forgo medical care, become sicker and end up leaving the work force permanently.
To be judged disabled by Social Security, someone has to be unable to work because of a life-threatening condition or a severe impairment that lasts at least a year. Though this strict standard discourages people who might fake injuries, it often excludes needy patients whose prognoses don't neatly fit the specifications.
Social Security would help Goodlow by providing a small income; it also would be a gateway to health coverage. Goodlow would probably be a candidate for Medicaid, a joint state-federal program for the poor, because she's impoverished.
Nationally, 9.2 million destitute citizens with severe disabilities have health-care coverage through Medicaid. However, under financial pressure, several states -- Missouri, Tennessee and others -- are enacting deep cuts to these health programs, threatening to throw tens of thousands of people with lasting impairments into the ranks of the uninsured.
Nowhere to go
Carol Welsh, 30, had no idea she would be caught in this bureaucratic limbo when she was diagnosed with a rare brain tumor known as adult ependymoma in 2000, a few weeks before finishing business school in Virginia. Welsh, an accomplished swimmer and Ivy League graduate, had been throwing up and suffering vertigo before doctors discovered the growth deep in her brain.
Covered by her student insurance, Welsh had brain surgery in May 2000 in Washington, D.C. Her recovery was difficult, and she spent seven weeks in the hospital regaining basic functions. It was then Welsh learned, with shock, that her student policy had a payment limit of $50,000, which didn't even begin to cover the expense.