A Bitter Pill
To receive aid for an autistic child, a Colorado family takes a vow of poverty
Leslie and Carolyn Reed were overjoyed when their second child, Darcy, was born in 1987. Compared with their boisterous 2-year-old, David, their tiny red-haired girl was calm and undemanding. "She was so good we called her our ornamental baby," says Carolyn.
She was, it turned out, too good. As Darcy grew older, her quietness began to seem strange. In 1990, Darcy, then 3, was diagnosed with autism. "She was withdrawn," says Leslie. "Often she'd just lie on the floor, sucking her thumb."
Specialists in developmental disabilities sent the couple to the University of Colorado Day Psychiatric Hospital. "They did speech therapy, occupational therapy, imitation therapy, things that Darcy desperately needed," says Carolyn. The cost: nearly $7,000 per month.
The timing couldn't have been worse. The Reeds were temporarily without family medical insurance. A year before, Leslie, 48, had left his job at a Denver printing company to launch his own desktop-publishing business. After David's birth, Carolyn, 44, had quit her job as a public-information officer to be a freelance writer. Cash flow was tight, and "health insurance wasn't something we could afford at the time," says Leslie ruefully.
Knowing they would not be able to pay for Darcy's care, the Reeds began searching for private insurance. Checking around, they learned that they couldn't afford the premiums even if they could have found a company willing to accept Darcy's preexisting condition. "Our only hope was SSI," says Leslie, referring to Supplemental Security Income, a federal program that provides Medicaid coverage for the aged and the disabled of any age. There was one catch: the Reeds' annual net income could not exceed $14,400.
So in 1992, Leslie gave up his business and took a part-time job with a nonprofit group that trains the disabled. Medicaid now pays Darcy's $1,800 a month costs for vision therapy, psychiatric visits and antidepressants. Neither Leslie nor Carolyn can afford insurance for themselves.
The Reeds have resigned themselves to a meager lifestyle. They pay $650 a month for a small two-bedroom house in Denver. They drive used cars and buy thrift-shop clothes. "Like all parents," says Leslie, "we want what's best for our kids." But a final bureaucratic snag has put barriers in the way of even that. Because SSI prohibits savings of more than $2,000 per child, the Reeds cannot put aside money for David's education or Darcy's uncertain future. "Our society can afford health insurance for all its citizens," says Leslie. "That we fail to do so makes us less than civilized."
For a Texas pair, marriage is a casualty
Butch and Marie Roy got married in 1983, after a three-week romance. Ten years and two children later, they say they are as crazy about each other as ever. Then why did the Roys—God-fearing people who believe in the sacredness of marriage—recently get a divorce? It was the last resort in their five-year struggle to get medical coverage for Marie and 7-year-old Joshua, who have chronic and potentially debilitating illnesses. "There is not anybody immune from this," warns Butch. "Everybody is one catastrophic illness away from being bankrupt."
The Roys' troubles began in March 1987 with Joshua's premature birth and the revelation that he had a hole in his lung and imperfections in his heart. Not long after Joshua was released from the hospital, his 2-year-old sister, Sarah, was rushed in with acute bronchitis. At the time, Butch, 47, was working as a lab technician at GNI Group Inc. in Deer Park, Texas, a midsize environmental-services company that covered his health expenses.
All that changed in 1989. In January, Marie, now 39, was diagnosed with multiple sclerosis. Four weeks later, Butch was fired from his job, though he had received a glowing evaluation from his supervisor several months earlier. Although GNI denies it, both Roy and his supervisor say Butch was fired because of the increased medical bills.
Suddenly the Roys were in trouble. While the company was required by law to make insurance available to them for 18 months, the Roys could not afford the premiums. And because Marie and Joshua had preexisting conditions, they were ineligible for most other insurance plans.
The Roys' problems grew even more pressing when Butch could not find a comparable-paying job. In 1990 they filed for bankruptcy. They sold land on which they hoped to build a home, as well as their mobile home and all their possessions. They sold their wedding rings for $40 to buy food.
Butch moved his family several times to get what work he could—he even washed cars for a while. After three years he landed a job as a salesman for a small environmental firm in Anahuac, Texas, which paid $375 a week. Since the company is too small to provide insurance, Butch turned to the government but learned that his $19,500-a-year salary exceeded the federal guidelines on eligibility. So that his family could get food stamps and his two children—but not his wife—could receive Medicaid payments, he asked that his wage be cut to $250 a week.
Which left Marie. Though she is prone to falling and has episodes of total blindness, Marie's application for SSI disability payments was denied for reasons she never understood. The only other way for Marie to get Medicaid, the Roys then learned, was if her monthly medical bills totaled more than $781 (even then they would have a $781 deductible). Or, Marie was led to believe, if she became a single parent.
The Roys are staunch Christians, and divorce goes against their beliefs. But despite Butch's initial insistence that "I'm not going to hell for health care," the couple was granted a no-fault divorce this January. Marie was able to get medical attention for the first time in two years. Fortunately this spring—after an expert in health programs stepped in and pushed their request through the system—Marie's application for disability and Medicaid was accepted. The Roys, who live outside Liberty, Texas, plan to remarry, but not until they are assured that Marie can retain her benefits. After several operations, Joshua's health is stable. "Family's the only thing we've got left," says Marie. "We're not giving that up."
A Maryland couple's good life is wrecked by illness
Kathleen Newell's blue eyes fill with tears as she recalls the good years. Kathy and her husband, Don, both 58, led a comfortable life thanks to Don's six-figure salary as a shoe-company vice president. They lived in a lakefront town house in Columbia, Md., played golf at the local country club and made frequent trips to Europe. "Life was wonderful," says Kathy.
Then in November 1989, Kathy discovered a lump in her lower abdomen. Doctors found a fibrosarcoma, a rare form of cancer. Says Kathy: "I thought, 'Well, you go on.' I wasn't prepared for the nightmare."
The nightmare, it turned out, was as much about finding affordable health care as the cancer itself. At first, Kathy's bills were covered by her husband's group policy with CIGNA, through his employer, United Footwear. Then suddenly, Don was told the company was closing its Maryland office. Not only was Don out of a job, he was left without insurance.
An individual policy with CIGNA would have cost the Newells $30,000 a year. "We had money in the bank," says Don, "but what would we live on if we put it all in insurance?" The Newells searched for another insurer, but they were repeatedly turned down because of Kathy's preexisting condition.
Meanwhile, Kathy's bills continued to mount: so uncertain was her prognosis, she had to be constantly monitored by doctors; plus, every three months, she had MRIs taken at Johns Hopkins Hospital in Baltimore. When Don was unable to find a job, they moved to a $625-a-month apartment and began selling pieces of their lives—such as their leather-and-inlaid-wood game table and Don's Corvette. During an 18-month period, the Newells accrued $50,000 in medical bills.
The screws had begun to tighten in the fall of 1991, when Kathy had an operation to repair severe damage caused by radiation treatment. At first, Johns Hopkins would not admit her unless she prepaid $12,000. "What a joke," says Don, who talked the hospital into accepting the $2,000 they had left, along with a promise to "pay as much as we could each month." After fruitlessly seeking help in every quarter—including the Red Cross and the American Cancer Society—the Newells thought about beggaring themselves to qualify for Medicaid. But Kathy resisted. "What are we supposed to do?" she says. "Say the hell with it and put the. burden on everybody else?"
Then two years ago, as the Newells contemplated a move to Dallas to stay with one of their three grown children, the clouds lifted. They gleaned information from a state representative that could have saved them a lot of anguish: Maryland is one of the states that gives HMOs financial incentive to accept people with preexisting conditions. For some reason, nobody—not the doctors or the hospital—had thought to inform the Newells. "That's the big question," says Don. "Why didn't anybody tell us?"
The Newells settled on CareFirst. The cost: $4,000 a year. In another welcome stroke, Don was hired a year ago to run a small shoe company.
The Newells are slowly beginning to recover financially. "It will take the rest of our lives to pay our bills," says Kathy, whose cancer could return at any time. "The sad part is, I may not even live to see them paid off."
WILLIAM PLUMMER and SUSAN REED
VICKIE BANE in Colorado, KAREN ROEBUCK in Texas and ANNA ISGRO in Maryland