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

Suffering children, desperate parents

By Debra Jasper
and Spencer Hunt
The Cincinnati Enquirer

Debbie Martin struggles to afford treatment for her son Adam, 10. Ohio doesnít offer Medicaid or other special health coverage for autistic children.
(Michael E. Keating photos)

Retired teacher Barb Steele has gone broke caring for her son Michael, 18, who suffers from a rare nervous system disorder. He takes many medications and needs constant care. She lost her job, spent her savings and sold her home to help care for him.
Blake Jamisonís face turns grim as he talks about the chance his parents Jennifer and Don will divorce to get his $653,000-a-year hemophilia medication. "Iím scared of losing my medicine," says Blake, 13. "But Iím even more scared of losing one of them."
Don Jamison faces a painful choice: He can divorce his wife or quit his job to qualify for government health care for his son, or he can risk not getting the $653,000 in medicine each year that keeps his boy alive.

Debbie Martin has this tough dilemma: She can let her 10-year-old autistic son go without care, or she can run up tens of thousands of dollars in doctor and hospital bills that she can never repay.

Barb Steele knows hard decisions: She's already spent her teacher's retirement money and cash from the sale of her house on medical care for her severely ill son. Now she can either buy groceries or repair the Toyota that gets him to the doctor.

"We're beyond bankruptcy," the West Chester mom says. "There's nothing left."

In the health-care world of 2003, thousands of middle-income families in Greater Cincinnati and the nation face extreme choices like these every day, The Cincinnati Enquirer has found.

Families are caught between soaring health-care costs and medical miracles that keep seriously ill people alive and everyone else living longer. Too rich to get government aid and too poor to pay extraordinary medical costs, some families are forced to make decisions that the rest of us can hardly comprehend.

They're selling their homes, cashing in retirement plans and burning through savings to pay for care their kids so urgently need. As their insurance runs out or premiums swell out of reach, some parents are considering divorce, bankruptcy or quitting their jobs to lower their incomes to get government aid.

The tough choices fall on families as state and local governments confront hard times by cutting programs that once helped thousands.

Officials say they have to cut back. Spending on Medicaid, the health-care program for the disabled or poor, jumped 40 percent in five years to $228 billion nationwide. In Ohio alone, just 25 of the most seriously ill people cost $17 million in 2001, an Enquirer analysis shows. One person's care cost $1.8 million in a single year.

To offset those costs, Ohio this year quietly reduced health-care coverage to 5,000 middle-income kids with diabetes, cerebral palsy and other serious diseases. Kentucky sent out letters to 1,900 ill or disabled people telling them their benefits would soon run out.

Ohio also made it tougher to get nursing care and other help at home - turning down 73 percent of the 7,088 people who applied since 2001. Many were parents of severely ill or disabled children who had been waiting for months or years.

Barb Edwards, director of the Ohio Medicaid program, says the decisions are heartbreaking but necessary.

"Do we pay more to get more doctors into the system, or do we cover immunizations for children? Do we help autistic kids, or do we help the elderly?" she asks. "The reality is we have limited resources to deal with unlimited need."

If trends continue, things will only get worse. Medical costs will continue to climb, people will live even longer with more serious illnesses, public funding will get stretched further - and more families will face more extreme choices every day.

"There is no access to help. No money for services. Families have to break up just to get help for their sick child," says Penny Wyman, director of the Ohio Association of Child Caring Agencies. "The social services system in Ohio is on its knees."

Did You Know?
Health insurance plans commonly pay a maximum $1 million in benefits. Typically, that's the most the insurer will pay for each person in a family plan. Lifetime limits of $1 million were considered generous when they first appeared in the late 1970s. But the health care that $1 million bought in 1978 would cost roughly $2.7 million today, considering inflation.

No way to pay

Don Jamison lies awake at night, worried for his son and haunted by fears. There's no way he can pay $653,000 each year for the drugs his 13-year-old son needs to keep hemophilia from killing him.

There's no way that he can't.

Jamison debates quitting the factory job he's held for more than two decades to qualify for government health care to pay for the drugs. He wonders if Jennifer, his wife of 16 years, should divorce him to lower her income and qualify herself. Maybe, he thinks, the couple should sell the 136-year-old farmhouse they've so painstakingly restored.

He might make one of those choices, if he thought it really would help.

But, he says: "If I quit my job and lose everything, will my son be healthy? No. How does it help the government for us to go bankrupt? It's not right."

Until 13 years ago, the stocky 42-year-old Jamison was just another young husband with a slice of farmland and middle-class dreams in rural Preble County. He never imagined he would someday need $12,500 in drugs each week for his son, Blake.

The severe hemophilia that afflicts the boy is much worse than blood that won't clot on a wound. Without help, Blake could bleed internally so much that he could become crippled or die.

Jamison wants Blake to keep taking Advate, a new prescription medicine that would let him grow up much like any other kid. The drug is safer than earlier, human blood-based medicines that put people with hemophilia at risk for HIV and other infectious diseases.

"Blake plays the piano, he's a first-chair trumpet player and he gets straight As," Jamison says proudly. "He reads Harry Potter. He does a lot of the things like other kids do, and that's just what we want for him."

The Jamisons once thought their private insurance would cover Blake's medical costs. But like thousands of other American workers, Don Jamison's health insurance policy had a lifetime limit of $1 million.

Even with Blake taking older, less expensive medicine in the early 1990s, the Jamisons' insurance was close to capping out by November 2000. The couple swallowed their pride and went down to the county welfare office to apply for government aid.

They hated telling strangers intimate details about Blake's health, their jobs and their incomes. They hated the thought of their neighbors finding out they couldn't afford care for their own son. But they figured the embarrassment would be worth it if they got help.

They never doubted they'd get it. After all, they had both worked hard and paid taxes all their lives. Yet the county quickly turned down their request.

With Don's job at a food service equipment company and Jennifer's work as a customer service representative, the couple earned $4,641 a month - far more than the $1,180 income limit for the help they wanted.

"I can only look at income," says Pam Sarver, a referral specialist with the Preble County Job and Family Services Department, who saw the Jamisons. She says the income rules force middle-income families to make terrible choices, but there's not much she can do.

"They'll ask me, 'If I lose my job or get divorced, could I get help then?' " Sarver says. "And I say, 'Yes, you can.' "

Despite their growing frustration, the Jamisons refused to give up.

When their insurance ran out over the summer, they bought additional coverage through Aetna. That insurance pays for their son's medicine, but the monthly premium is $1,389, nearly half their take-home pay.

The Jamisons then turned to the Internet and found a series of grants to help cover part of their insurance costs. They also were just approved for insurance help from a government program they believed was a long shot.

The Jamisons now have to decide between the two options. Either way, they know that when the money runs out in a year or two, they will be back where they started, trying to pay for insurance that's well beyond their means.

At 13, Blake worries most that his parents might divorce to qualify for help. "I'm scared of losing my medicine," he confides. "But I'm even more scared of losing one of them."

The Jamisons say they had no idea how far they would have to go to take care of their son. "It's been total devastation," Don Jamison says. "It feels like I've been walking down a long, dark hallway knocking on doors, but no one is answering."

His co-workers offered to host a fundraiser to help. But, "What people don't understand," Jamison says, "is that we can't sell enough cookies to cover this."

Left behind

Debbie Martin is scared, too. The Colerain Township mom has spent the past decade fighting to get care for her son, Adam, a 10-year-old with autism.

She's had little luck.

Ohio doesn't offer any special health care to its 4,000 autistic children; Kentucky pays for counseling only for the poorest of its 1,400 autistic kids.

Autism refers to a wide range of neurological problems. Autistic children often struggle to communicate, make eye contact or socialize. They may flap their hands over and over or repeat the same sentences for hours.

Dr. James Bryant, director of the Ohio Bureau for Children with Medical Handicaps, says no one knows autism's cause or the best way to deal with it. As a result, he says, "We can't spend the limited dollars we have on treatment."

The lack of outside help leaves Martin, a divorced secretary who earns $39,000 a year, struggling to pay for care. Her son was diagnosed at 6 after he started having small seizures and behavior problems.

"He would go up to kids and smack them on their heads. He was aggressive and always hitting people," Martin says. "But with Adam, you don't know what that means. It could be his way of communicating, of saying hello."

When anti-psychotic drugs didn't work, Martin sent her son to the psychiatric unit at Cincinnati Children's Hospital Medical Center. Ten days of care cost nearly $24,000, with 80 percent covered by insurance.

Martin is still trying to pay off the remaining $4,800, and paying for further treatment is out of the question. Instead, she spends all her time either on the job to keep up with medical payments, medication costs and household bills, or at home caring for Adam and her other son, Nicholas, 6.

"They told me I make too much money to get help. But if I just quit my job and flipped burgers I could get SSI (Supplemental Security Income)," she says. "It doesn't make sense.''

As she talks, Adam interrupts every few minutes. Over and over again for hours he asks the same question about a teacher's aide he once had: "Where's Bobby? Where's Bobby?"

Martin shrugs. "People at work ask me how I do it, how I balance all the stress. I tell them I make it day to day because I don't have a choice. Politicians like to talk about how no kid is left behind, but that's not true. In this country, kids get left behind every day."

Scraping by

Barb Steele doesn't worry that she'll go broke someday taking care of her adopted teenage son, Michael.

She already has.

The West Chester woman has spent tens of thousands of dollars over the past 16 years to treat Michael's extensive neurological problems. A retired teacher, she's gone through her retirement account, her savings and cash from the sale of her home to pay for travel to see specialists and costs not covered by Medicaid or insurance.

"I'm 56 years old, and all my friends are retiring. But I'm going to have to start over," Steele says. "I can't even cover the basics. By the time I pay the rent, the bills and the electric, I have $23 a month left."

Steele fell in love with Michael the first time she saw him 16 years ago. Butler County told her that he had a learning disability, but the extent of his problems weren't known until he turned 5.

Michael was diagnosed with familial dysautonomia, a disease that affects only a few hundred people worldwide. Children with the disorder, caused by the abnormal development of the nervous system, have a hard time swallowing, talking, walking and growing.

Michael's 14 medications today cost $8,500 a month, including $4,000 for growth hormones. Medicaid pays that, plus costs to treat seizures, hyperactivity and behavior disorders. But over the years, the debts have piled up.

Steele started missing work to take her son to doctors. Eventually, she decided to work part-time so she could stay home more during the day. "With the muscle spasms in his throat, you have to keep a constant eye on him."

By July, the Steeles lived in a clean but run-down apartment in West Chester, scraping by on $223 a month in welfare, his $500-a-month Social Security check and a small adoption check.

"This is the worst it's ever been," she says. "I'd always had the house as reserve money, but now we've got nothing. And I have to keep my car together because we have so many doctor appointments."

Steele fights every day to get nursing help so she can go back to work. Medicaid agreed to pay for eight hours of daily care over the summer, but aides could only work in two, four-hour blocks - leaving two hours in the middle of each day not covered.

"What kind of job can I get where I have to leave for two hours in the middle of the day?" she asks.

Michael, meanwhile, pets the giant gray cat he named Elvis and shyly shows visitors his neatly organized bedroom, his cherished Frank Sinatra CD, an old boom box and a few puzzles.

"I love Sinatra and Perry Como," he confesses, grinning.

He sprawls out in front the television and watches cartoons, while his mom agonizes over her limited options.

"There are families that would have given him up by now, but I keep thinking, this isn't a used-car sale. You just can't give your child back when there are problems."

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.