By Debra Jasper
and Spencer Hunt
The Cincinnati Enquirer
Ohio pays for nurses to come to Symone Huckaby's house seven days a week. The 5-year-old has a rare genetic disease so disabling that her parents can't possibly give her around-the-clock care.
Dr. Ron Levin (right) of Children’s Hospital helps families navigate – or battle – multiple bureaucracies. Nurse Connie Van Zant tends to 8-year-old Zachary Cramer’s feeding tube as his sister, Caitlyn, 6, sits on the examining table.
(Michael E. Keating photos)
Symone Huckaby suffers problems with mobility and stability. Amid an array of expensive equipment in the family's West Chester living room, she sleeps in her favorite mini-recliner.
Nurse Amy Korsunsky moves Symone from the floor to a favorite chair. Symone needs to be moved often to avoid contact sores and assist in circulation.
The state also pays for Symone's medications, doctor visits and hospital stays not covered by insurance. In all, the little girl receives $150,000 each year in care, including three or more $500 injections a month. Her doctor even helped her family get a new washer and dryer and furniture for her room.
"We are some of the lucky ones," Symone's father, Lawrence Huckaby, says.
The Huckabys understand what many families don't: As states and insurance companies make choices about who gets health care and who does not, families need a strong will and a formidable advocate to prevail.
For the Huckabys and hundreds of other families in Greater Cincinnati and Northern Kentucky, that advocate is Dr. Ron Levin.
"His staff helped us fill out the right forms. They put us in touch with all the right people. He made phone calls on our behalf. They guided us every step of the way," Huckaby says.
A pediatrician at Cincinnati Children's Hospital Medical Center, Levin is in such high demand that he has 500 patients in his practice and another 500 on a waiting list. He treats some of the most severely ill children in the region - kids with brain damage, kids who can't walk or talk, kids who need ventilators to breathe and tubes to take in food.
But Levin says his toughest work often goes beyond medical care.
Levin, his social worker and nurses help families successfully battle insurance companies. They help families qualify for government-paid health care, and they coordinate surgeries and visits with specialists. They connect parents to the right state agencies, county boards and nonprofit groups that provide everything from wheelchairs to furniture and appliances.
"There are a zillion different programs out there," Levin, 56, says. "Families walk around in a daze because they are blown away, not just by their child's illness, but by the bureaucracy they have to go through."
Levin says the state routinely turns down middle-income families who qualify for help. Insurance companies often deny claims they should pay, he says.
The state doesn't track how many people have been denied help from Medicaid overall. But since 2001 officials have turned away 73 percent of the 7,088 families who applied for special waivers, which do away with income rules and pay for health care for disabled children.
"The bureaucracy is just unbelievable," Levin says. "Sometimes I think if you have a medically fragile child, you have to either be a Rockefeller or homeless to get the care you need."
Jamie Wandsnider, 27, knows first-hand the difficulties. Her 5-year-old son, A.J., was in a car wreck two years ago and is now a quadriplegic. She's sure she wouldn't have qualified for a Medicaid waiver without Dr. Levin's help.
|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.
Levin spent an hour with A.J. in his clinic one recent afternoon. The doctor inspected the boy's neck brace, bandaged a wound on the back of his head and talked to Wandsnider about a special $25,000 collapsible lift that would fit into her small trailer in Harrison.
She needs the lift to help her son get in and out of bed, but Medicaid won't pay for it because it costs thousands more than a standard lift that's too big for her house.
Levin told her he was trying to locate a special lift that has been used.
"There are families with tens of thousand of dollars worth of equipment in their garages," he explains. "But it's difficult to find someone who will take on the liability of picking it up and redistributing it."
Helping families like the Wandsniders is a critical service, says Jeffrey Whitsett, director of neonatology and pulmonary biology at Children's Hospital, which subsidizes Levin's practice with $250,000 a year.
Whitsett says that as doctors keep more seriously ill children alive, the hospital has a responsibility to help families care for them once they go home.
"Dr. Levin is absolutely dogged in making sure families get what they need," Whitsett says. "Many of these kids wouldn't be able to go home, or the families wouldn't get support, without him."
In addition to helping parents get health care, Levin also takes steps to ensure they don't get lost in the hospital's own bureaucracy.
He gives families booklets that sum up their severely ill children's health histories - a necessity because some are so ill they have 50 volumes of medical charts.
"If the child shows up in the emergency room and someone orders a chart, they might get chart 35 and never realize they don't have the full picture," he explains. "We take on the toughest cases, so there are a lot of difficult problems to sort out."
Lawrence Huckaby's daughter is one of those tough cases. Symone has Aicardi syndrome, a rare disease that causes a malformation of the eyes and spine. She is profoundly mentally retarded, has seizures, eye lesions and must be fed through a tube. Her muscles have so deteriorated that she can no longer lift her head.
"It's like the lights are going off," Huckaby, 34, says. "She used to fight to maintain what little control she had, but she eventually lost even that."
The little girl's condition is so rare that doctors say she was only the 200th person worldwide born with the disease. The average life expectancy of an Aicardi baby is six years.
Symone just turned 5.
"Every time she has a birthday, we get more scared because we know when she reaches a certain age it could mean death," says her mom, LaShawn, 30, as she watches a nurse lay her daughter on a blanket on their living room floor.
The couple, who live in Maineville about 30 miles north of Cincinnati, are grateful for the nurses who work eight hours a day. But the Huckabys constantly worry about what will happen if they lose their health care.
LaShawn Huckaby attends nursing school in Cincinnati during the day and works afternoons and nights at Shepherd Color Co. She supports the couple's three children on her $33,000-a-year salary. Her husband attends Thomas More College in northern Kentucky and is looking for a job.
He says it's hard to find the flexible schedule he needs to take Symone to her doctors and look after her when nurses are sick or on vacation.
"I'm exhausted, my wife is tired and we've been doing this for five years," Huckaby says. "It's tough because Symone needs 80 percent of our attention, but we also have a 16-year-old daughter and a 7-year-old son who is full of energy."
The Huckabys hope their new college degrees will ease their financial burden, but they fear they might actually go backward. "If we get good jobs with higher salaries we might lose some of our state benefits and have less money," Huckaby says. "It's horrible that you can't make a living and take care of your child at the same time."
Despite the hardships, the Huckabys are happy that they have more health coverage than most. Huckaby is convinced their daughter can live for decades - like another woman with Aicardi who is 42 - if she can continue to get the proper medical attention.
"All of her medications, her feeding program and doctor and nursing care have already contributed to her longevity," he says, holding his daughter in his arms.
"We've been lucky because Dr. Levin is a great advocate," he says. "If you don't do what he tells you to do, he will chew you out. But as a parent, I appreciate that because I know he is really watching out for my kid."
Levin says he learned over the years that he could get more care for his patients if he was willing to challenge the system in unusual ways.
He once put a note in a severely ill patient's chart that said the child was so sick it would be ethically unacceptable to send him home without nursing care. At that point, insurance company officials had to decide whether to pay for care at home or continue to foot the hospital bill. "They opted for the home care," Levin says.
Another time, he threatened to call a local television station when insurance officials refused to cover care for a severely ill child. The officials reviewed their policy and changed their minds.
"Doctors have more clout than they think they do," Levin says, grinning. "We just have to be willing to use it."
In his khaki pants and denim shirts, Levin seems more unassuming than aggressive. But he says working with severely ill kids every day keeps him motivated to do what it takes.
"We'll spend a million dollars keeping these children alive, but we only want to spend five bucks on them after we send them home," he says. "We brag about saving the one-pounder. But while we are getting better and better at saving these lives, we have to recognize that the lives we save aren't normal."
Levin says he operates under a philosophy that everything he does should accomplish something.
"It's simple, really," he says. "You can be the greatest doctor in the world but if you can't get the care you prescribe to the patients because they have no way to pay for it, then you aren't such a great doctor after all."
Back to Extreme Choices