A N   E N Q U I R E R   S P E C I A L   R E P O R T
Sunday, December 14, 2003

Bureaucrats fumble while a family sinks


'A helpless, horrible feeling': As a daughter's illness overwhelms them, getting state help is a grueling battle

By Debra Jasper
and Spencer Hunt
The Cincinnati Enquirer

[photo]
Randy Hahn casts a wary eye toward his daughter. Audrianna, in a sign of affection, will bite instead of kissing.
(Michael E. Keating photos)

[photo]
Melissa, daughters Julia and Audrianna visit Audrianna’s neurologist Dr. Khaled Zamel (in lab coat) at Children’s Hospital in Columbus, Ohio.
[photo]
Melissa Hahn sits across from Audrianna during one of many hospital stays. Fatigue and stress take a heavy toll.
Melissa Hahn broke out in hives and cried for two days after the letter arrived. She had lived on the edge for six long years, and now the worst had finally happened.

"I kept thinking, 'What if we have to get divorced? What if we lose everything?' " she says.

The letter, sent last March, said the state could no longer afford to help as many middle-income families like hers. It said that in 2004 the Hahns would have to pay for thousands of dollars each year in co-pays, medical equipment and other costs for their daughter, Audrianna, a blonde, blue-eyed 6-year-old who is so seriously ill she can't walk or talk.

"It's a helpless, horrible feeling," Hahn said after getting the news. "I can take care of the rest of my children, but I can't take care of her. I don't want the state's help, but I need it so bad."

Hahn was one of 5,000 Ohio families notified this year of budget cuts in the Bureau for Children with Medical Handicaps. What happened next is a classic example of what working parents go through when they try to get care for their medically fragile children.

At the time, Hahn, 27, already was caring for her own four kids and babysitting as many as eight more each day to make extra cash. Her husband, Randy, 30, worked six and sometimes seven days a week to earn overtime in a car-parts factory near their home in Perry County.

Last year, he made $37,000 after taxes, a decent salary in their hometown of Somerset, a small Appalachian community. But with a seriously sick child and three other kids, the family struggled to make ends meet.

They knew they never could come up with thousands of extra dollars each year for insurance co-pays and medical necessities like $1,800 for a special stroller.

They talked about getting divorced so one of them could qualify for Medicaid, the government health-care program for the sick, disabled and poor. They talked about Randy quitting his job. But then how would they care for their other three kids?

"Nobody wants to help my child because she's so sick, " Hahn says. "They told me I could sign away my rights to her as her legal guardian and put her in an institution, but I couldn't do that. It would be easier for me to die than put her away.''

Exhausting and heartbreaking

Frustrated and angry, Hahn felt like she had been forced to fight the system since her daughter was born in 1997.

At 8 pounds, 4 ounces, with tufts of blonde hair and a sweet grin, doctors said Audrianna was a perfectly healthy newborn. But Hahn was uneasy the day she took her daughter home. Something wasn't right.

In her first year, the little girl screamed for weeks at a time, rarely slept and started having seizures. She spent her second birthday in Columbus Children's Hospital, where she was treated for convulsions and stomach abscesses. She was hospitalized five times in the summer of 1999 and a dozen more times the next year.

In 2000, doctors removed Audrianna's saliva glands to stop her excessive drooling. "By then, we realized it was worse than we could have ever imagined," Hahn says.

Feeling desperate, the Hahns held a local dance that year to raise $8,000 to take their daughter to see a Pennsylvania genetics specialist. But he couldn't tell the Hahns any more than they already knew - that Audrianna had extensive brain damage, epilepsy and a seizure condition.

Hahn went back home depressed but determined. "My goal every day," she recalls, "became to just keep her alive."

The sacrifices became routine. On a typical summer day, Hahn was up at 6 a.m., washing seven loads of laundry and hanging it on the line. She dressed and "fed" Audrianna, giving her five different medications through a tube in her stomach. Then she fixed cereal for her other kids, Julia, 11, a stepson, Zach, 10, and Noah, 3.

One by one, parents dropped off their kids for Hahn to watch. She changed diapers, fixed lunches, fed babies and tube-fed Audrianna every two hours. In the evening, Hahn sent the other children home, washed windows, vacuumed the carpet and finally collapsed onto the couch, pulling her daughter into her arms.

The little girl stared at her with big round eyes, not a hint of recognition on her face. "Sometimes it's even more heartbreaking than exhausting," Hahn says, shifting on the couch when Audrianna tries to bite her. "I'm not sure how much longer I can last. I don't know a night when I don't cry."

'Not a way out'

Hahn takes care of Audrianna in ways that most parents never have to consider. She administers rectal Valium to ease the little girl's seizures. She cleans out her daughter's impacted bowels because the girl eats so much of her own hair. And there will never come a day when Hahn can quit changing diapers for her daughter, who has the mentality of an 8-month-old baby.

"I want a normal Audrianna," Hahn admits, sounding almost ashamed by the confession. "I want a little girl who can run and jump and do everything a normal kid can do. I so wish my little girl wasn't sick. I pray every day for the strength to cope."

Threatened with the loss of government health-care money, Hahn and her husband spent the summer praying for a way out.

They had one hope left. In 1999, they had applied for a waiver from income rules that determine who gets Medicaid. The waiver would allow the Hahns to qualify for at-home nursing care and other benefits based only on Audrianna's income, which was zero.

The couple knew that chances weren't good. They had waited two years before the state even sent a worker to assess Audrianna. The worker said she qualified for help, but that decision was overruled by a supervisor.

Hahn appealed and found herself caught in a squabble between the Department of Job and Family Services and the Department of Mental Retardation. Workers at each state department insisted that the other agency was responsible for helping Audrianna.

Through it all, Hahn's family grew angrier. "The poor get all kinds of help, and the rich don't need it," Hahn's mom, Linda Litzinger, says. "It's the middle class who are hurting the most."

Finally, in early 2002, an official agreed that Audrianna might be eligible for state aid but said the initial assessment of her illness was too outdated. He ordered new tests, and the process started all over again.

Hahn wanted to scream. "There is not a way out for us," she said. "We're headed straight for the toilet."

By last July, the waiting and the stress were taking their toll. The Hahns had rushed Audrianna to the hospital in the middle of the night after she developed a high fever and spit up blood. Randy Hahn sat on the hospital bed beside his listless little girl, the fatigue showing on his face.

"If she had been born 10 years earlier, she never would have survived," he said, looking at his daughter.

He loves Audrianna deeply, he said, but sometimes he thinks about what his life would be like if she hadn't made it. Without her, he could take his family on vacations. He could have dinner with his wife or take his other children to ballgames.

"There would be simple things, like we could go outside with the kids and not have to worry about her eating grass," Randy said.

As Melissa Hahn listened to her husband talk, she agonized over their choices.

"If she goes to an institution," Hahn said quietly, "they won't love her like we do."

Finally, one burden lifted

In late July, the Enquirer asked the Ohio Department of Job and Family Services about the Hahn case, and a few days later a state hearing officer approved the family's request for aid, saying Audrianna had qualified all along.

Officials say the newspaper inquiries didn't sway their decision, but Hahn isn't so sure. "I don't know that I ever would have gotten help," she says. "No one was taking me seriously."

Even after the state ruled in her favor, though, officials didn't notify the county to process her benefits. Weeks went by, and nothing happened.

Sara Abbott, chief of the Bureau of Home and Community Services for the Ohio Department of Job and Family Services, says Hahn's case was inadvertently lost in the system until the newspaper called a second time.

She promised to change procedures and improve follow-up.

Today, the state pays $108,000 each year for Audrianna's daily nursing care and special equipment and also picks up additional medical costs. The Hahns don't worry anymore that they will have to get divorced or go bankrupt to save their child.

"We still worry about her, but so much has been lifted from us," Hahn said in October.

"In the end, we were lucky. But I know there are a lot of parents out there who aren't."



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Multimedia
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.