A N   E N Q U I R E R   S P E C I A L   R E P O R T

Day-care choices difficult
for those who need it most

By Debra Jasper
and Spencer Hunt
The Cincinnati Enquirer

At St. Joseph’s Home in Evendale, Sister Lynn Heper attends to a 9-year-old handicapped girl the staff calls Queen Mimi. The home provides long-term care, but also has a handful of coveted day-care slots to give parents a break.
(Michael E. Keating photo)

Parents frantic to find someone to help care for their seriously ill children face grim choices.

In Greater Cincinnati, exhausted parents searching for day care must call two to six months in advance to reserve one of the five available beds at Saint Joseph Home in Sharonville. Officials say it's the only place in the region that will watch over kids so sick that some can't walk, talk or survive without a ventilator.

Such intense supervision doesn't come cheap: Day care at Saint Joseph costs $302.75 a day.

"People are desperate to get nursing care at home, but there aren't enough nurses or they don't show up," says Theresa Brokert, a nurse who manages the Saint Joseph day-care program. "So parents really need a break from the stress of watching over their children from time to time."

Parents who need long-term care have even more limited options. First there's the wrenching decision of whether to institutionalize a child. Then there's the hard decision of where.

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.

Of the six biggest Ohio facilities that look after medically fragile children, four were so troubled that in the past three years the state threatened to revoke their funding, The Cincinnati Enquirer has found.

State inspection reports said that serious incidents weren't always investigated and some residents were abused or neglected at the homes. The owners all promised to fix the problems, and none of the homes was shut down.

The Saint Joseph Home was one of the most favorably reviewed. State inspectors found only minor problems at the home, which also cares permanently for up to 47 severely disabled people.

"Medicine does wonderful things today to help children stay alive who once would never have made it," says administrator Sister Marianne Van Vurst, as she helped a fragile little girl sit up in a bed. "It's our job to care for the ones that survive, to give them a dignity of life and accept them for who they are."

More than a dozen families are on a waiting list to place their children permanently at Saint Joseph, where 88 percent to 90 percent of care is paid for by Medicaid and the rest is covered by private donations. The cost is about $115,000 a year for each child.

The brightly colored bedrooms are filled with children in tiny, toddler-sized wheelchairs or hooked to ventilators. Most are severely mentally retarded or brain-damaged. Others can't talk.

Van Vurst says the illnesses can be tough on everyone, including staff workers who develop deep attachments to the children. When a child dies, workers place on the empty bed a hand-sewn quilt depicting a baby being carried to heaven. The child's name is then inscribed on a plaque over a stone.

It reads, "Gone to be an angel."

"Somebody said to me, 'How can you do this every day?' and I say, 'How can you not?' " Van Vurst says. "This is a labor of love. These children don't know hatred. They don't know prejudice. They are perfect children."

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.
(Requires Flash player)

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.