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Too expensive to save?

Ethical questions are tormenting: Can society afford to keep the sickest of us alive at all costs?

By Spencer Hunt
and Debra Jasper
The Cincinnati Enquirer

COLUMBUS — Health officials bragged this year that they finally got thousands of sick and disabled Ohioans off a waiting list to get state-paid care in their homes.

How did they do it? Since 2001, they turned down 73 percent of the 7,088 people who had applied for nursing and other at-home help. Many were parents of severely ill or disabled children who had been waiting for months or years.

Did You Know?
The state of Ohio knows that private companies have misspent at least $135 million in Medicaid funds since 1995. Yet the state has recovered only 10 percent of the money that companies overbilled for doctor visits, oxygen, ambulance trips and other health-care services.

State officials said last spring that they would make collecting more of the money a priority. Yet in just four cases that totaled nearly $5 million, not a dime has been collected. Mark Gribben, a spokesman for the Ohio Attorney General, says his office is still pressing: "The fact that a check hasn't come into the state doesn't mean we aren't making progress."

A proposal in the Legislature would require tougher contracts with private companies and audits of those getting more than $500,000 in public money each year. "It's time to get some real teeth in our laws so we can get our money back," says the bill's sponsor, Sen. Jeff Jacobson, R-Butler Township.

Your Choice
As a legislator, it's your responsibility to help design and pass a state budget that spends no more tax dollars than it takes in. The economy is in recession, and the state has lost thousands of manufacturing jobs. Income and sales tax revenues are plummeting, while health-care costs are soaring.

Medicaid, the program that provides health coverage to more than 1 million poor and disabled people in your state, will cost an additional $2 billion over the next two years just to maintain current levels of care. The increase is so great that options include a 1-cent increase in the state sales tax and deep cuts to road, school and university funding.

If you were a state legislator, what would you do?
Make your choice

Most Expensive Conditions
Nearly 25 percent of Ohioans covered by Medicaid account for almost 75 percent of its cost.
The most expensive cases.

Who's Responsible?
These are the officials and agencies making decisions affecting people's health care.

This is just one example of the hard choices that Ohio, Kentucky and 36 other states are making to rein in soaring health-care costs. States were so broke this year that they slashed programs, made it harder for people to get in them and raised fees, affecting millions of sick and disabled people.

The deep cuts have intensified a growing debate among doctors, families, politicians and medical ethicists, who argue bitterly over whether the United States can afford to keep people alive at all costs and cover every medical need.

Society first accepted responsibility to care for the disabled, poor and elderly when it created Medicaid in 1965 as part of President Lyndon B. Johnson's Great Society. But as millions of people enrolled and medical technology advanced, states have been forced to ration health care in new ways - and make extreme decisions about who gets care and who doesn't.

Some question whether the country can continue to spend billions a year just to keep people alive in vegetative states while ignoring other illnesses like autism. Highlighting the issue are patients like Terri Schiavo, a brain-damaged Florida woman whose parents and others have fought to keep her alive despite her husband's wishes - and whose medical expenses already have cost more than $1 million.

"The pot of gold in this country only has so much in it, so someone has to decide where to put it," says Arthur Zucker, director of the Institute for Applied and Professional Ethics at Ohio University. "Society must decide whether all life is totally valuable and if it isn't, who makes the choices and who gets care?"

The cuts to health-care programs have been tragic for families with severely ill children, advocates say. Middle-income families, especially, find they make too much money to qualify for government aid but not enough to pay for what they need. Government decisions and medical know-how have forced many of these families to make agonizing choices that were unheard of a few decades ago.

"It really tears them apart, right through the middle," says Janice Connallon, an analyst with Family Voices, which represents 40,000 families nationwide. "The strain is almost unbearable."

It's also widespread.

Kentucky this year made it tougher to qualify for a program that provided in-home health care and sent letters to nearly 1,900 ill or disabled people telling them their benefits were going to run out.

Florida froze enrollment for its low-cost health insurance program, Kidcare, a cost-saving move that added more than 12,000 children to a statewide waiting list since July.

Last year Arkansas hired a managed-care company that denied treatment to 43 percent of the mentally ill children seeking help.

Maryland refused to pay for life-saving liver transplant surgeries for two children, arguing that while it was medically necessary it was not "appropriate."

That case went all the way to the Maryland Supreme Court, which decided the state "can't do a cost-benefit analysis when making decisions about life-saving organ transplants."

Medicaid monster

Ohio Gov. Bob Taft called Medicaid "the Pac-Man of the budget" in his State of the State speech in January. That was an acknowledgement that the health-care program for the disabled and poor has become so expensive that it's gobbling up bigger chunks of state funds every year.

In five years Medicaid's cost in Ohio increased 34 percent to $8.9 billion. That was one-third of the entire state budget in 2001, compared to 16 percent in 1995.

In Kentucky, Medicaid payouts went up 30 percent, to $3.4 billion, over the same time. Nationally, Medicaid expenses jumped 40 percent in five years - to $228 billion in 2001.

Taft was so alarmed at Medicaid's increasing costs that this year he proposed massive cuts in the program, including eliminating dental care, eye care and psychiatric services.

Lawmakers balked and instead temporarily raised the state sales tax a penny on the dollar.

But they couldn't save everything.

Cutting back

Ohio's Home and Community Based Services program is one victim.

This Medicaid program pays for nurses, aides and medical care that help thousands of Ohioans with severe illnesses and disabilities live in their own homes.

In February, state officials changed the program's rules so it would only pay for people whose illnesses and disabilities were so severe that they would otherwise be living in a nursing home or hospital.

For the 7,088 people who had applied for the program, just 1,918 could get in. On average, people had waited 407 days - more than a year - for help.

Barbara Edwards, the state Medicaid director, says it was a harsh but necessary choice because the program can only pay for people with the most severe conditions.

"It was heartbreaking," Edwards says. "We had people with horrific needs."

That wasn't the only state program cut back. Also this year, the Department of Health slashed health-care coverage to 5,000 middle-class children with diabetes, cerebral palsy and other serious diseases.

The changes hit hard in the Bureau for Children with Medical Handicaps, whose state funding was cut in half from $12.5 million to $6 million a year. The cuts forced the little-known agency to reduce coverage to middle-income families for medical co-pays, visits to specialists and equipment like child-sized wheelchairs and respirators.

That means families will now have to pay thousands of dollars out of their own pockets that the state used to cover. Bureau Director James Bryant acknowledges that the decision may force some families to go bankrupt, but he says he had no choice.

"We're not a rich agency," he explains. "We can't be everything to everybody."

Back to Extreme Choices
In Their Own Words
Three parents speak out on how their child's situation affects various aspects of their lives. Hear their stories in their own words.
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Listen to these mothers' advice for other families:
Barb Steele
Debbie Martin
Melissa Hahn

Photo Galleries
A Photographer's Journal
Enquirer photographer Michael Keating tells the story of these families through his own words and photos.

The Hahn Family
Melissa and Randy Hahn are dealing with a daughter that has extensive brain damage, epilepsy and a seizure condition.

Your Choice
These situations are hypothetical, yet drawn from real experiences. What would you choose?

You are a physician, free to accept or refuse anyone as a patient. Do you treat someone who has a low-paying job that does not proved health insurance coverage?
You make the choice.

How much care should your critically ill newborn receive?

How do you pay when your insurance runs out?

You're a legislator. Where do you spend the money?

Did You Know?
Ohio hasn't increased its payments to doctors seeing Medicaid patients in three years, but nursing homes get automatic increases every year. It's state law. Nursing home costs increased 31 percent in five years to $2.2 billion, making it the health care program's single biggest expense in 2001.