Ted Morrissey, a middle-class Nebraska insurance agent with a good health care policy, has spent "hundreds of thousands of dollars" on treatments for his 16-year-old daughter who has complex mental health problems that get worse by the day.
At the age of 5, Jaimie was diagnosed with Tourette syndrome, as well as accompanying obsessive-compulsive disorder.
"She had no control over her muscle movement, so we would wrap her in a sheet like a burrito just to keep her from straining her muscles," said her father.
Medication has helped, but it's also caused obesity. Teasing at school by students and teachers triggered life-threatening anorexia by the time she was 12, according to Morrissey. Refusing to eat, the teen developed a gastrointestinal disorder and required a feeding tube.
"We've been battling, doing nothing more than jumping hurdles and falling into pits for 11 years," he said. "This has milked us dry financially."
The Mental Health Parity and Addiction Equity Act, which was passed in 2008, tagged on to the financial bailout, mandates that health insurance benefits cover equally both mental health and medical services -- so that those with, say, depression are treated the same way as those with diabetes or AIDS.
The law, which went into effect in 2010, applies to both in-network and out-of-network care and hung its success on a coalition of lawmakers who all had been touched by mental illness.
But a study published today in Pediatrics magazine suggests that this is not enough for struggling families.
The study provides the first empirical evidence that the law hailed as a victory for families does not "meaningfully improve" their financial protection. Costs have been reduced overall by about 5 percent, but the average savings is only about $178 a year.
"I think that we worry most about the sickest children," said lead author Colleen L. Barry, associate chair for research and practice at the Bloomberg School of Public Health at Johns Hopkins University in Baltimore, because their costs are the greatest.
"The concern is that [high out-of-pocket costs] inhibit treatment seeking and pose a barrier to families trying to get high quality treatment for their children," Barry told ABCNews.com. "There are definitely cases of families being bankrupted from this, taking years to pay off medical expenditures, and making decisions for treatments motivated by cost of care."
Jaimie, which is not her real name to protect her privacy, suffers from anxiety so severe that she goes into a trance-like state called "conversion disorder." Sometimes her parents fear that she might become violent.
"She becomes so overwhelmed that her brain just shuts down and she passes out or goes into seizures," Morrissey said. "We never know when it's going to happen."
The teen has not been in school since September.
This week, she was to go to an expensive residential treatment facility in Durham, N.C., which is 1,200 miles from her home in Omaha. "It's hard to find a place that doesn't want $28,000 up front -- we are at the end of our rope financially."
The Morrisseys have been rejected by Social Security, disability and Medicaid and the out-of-pocket costs have added up, according to her father.
"We have nothing," said Morrissey. "Now I am worried about losing my home. This has been devastating."
The Morrisseys' insurance policy pays 80 percent of Jaimie's costs, but the bills have been overwhelming.
"If you have a $200,000 bill, you have to come up with $40,000 and try to pay that," said her father. "We pride [ourselves] in paying our bills, but you end up buying the groceries on credit."
An estimated 11 percent of children in the United States are affected by mental health and addiction disorders with significant costs, according to the study, and mental health disorders are the primary cause of hospital admissions for early teens.
Mental Illness Begins Early, Treatment Delayed
About half of all lifetime cases of mental illness begin by the age of 14, and decades often lapse before these people get treatment, according to research supported by the NIMH. By the time they reach adulthood, their disorders are more severe and not as easy to treat, leading to the development of co-occurring conditions, research finds.
The multi-university study looked at the heath care policy for federal employees, which is comprehensive and generous. "We should all have the kind of insurance that members of Congress have," said Barry.
"Historically, there has been inpatient day and outpatient visit limits for services," she said. "For example, you only get 25 outpatient visits. After that, families pay everything themselves. That was the old way of doing things. Now, if those limits don't exist for medical care, they shouldn't exist for mental health care."
Barry did say "there's reason for hope," because costs do appear to be going down, and financial protections for families that emerge from this law should be larger than in the study.
But families who are struggling are far from hopeful.
Another family from Nebraska was urged by doctors to give up custody of their son Ned to the state to "open the door for services," according to the boy's grandmother, Mary Thunker, 59.
Practically from birth, the boy was violent and out of control. He was eventually diagnosed with anxiety, attention deficit hyperactivity disorder (ADHD), opposition defiance disorder and some bipolar tendencies.
"The doctors knew that the only way to get services in the time frame was to give up custody and let him be a ward of the state," she said. "I came unglued and said, 'We are never doing that.'"
In 2009, when Ned was 12, his doctors said the boy needed "more than a year" of expensive residential care and the state denied payment, according to Thunker.
Ned was covered by Medicaid and his father had private insurance that covered much of the out-of-pocket expenses, but the family spent "thousands" on traveling, meals and therapy for other members of the family. They even moved 150 miles from their home to Omaha so he could be placed at Boys Town, where he lived for more than a year.
Today, Ned is 15 and stable, but the financial strain for him and others continue.
As for Jaimie Morrissey, she has been to numerous hospitals around the country to deal with her multiple problems.
"We went to a place in St. Louis for residential treatment for five months -- then insurance kicked her out," said her father. "We had to take her home and deal with it."
"We have been kicked around from facility to facility," he said. "I am nowhere as sane as I was."
Her siblings, aged 13 and 9, are also suffering.
This week, Jaimie was to go to North Carolina for nine weeks of residential treatment.
"How are we going pay for the hotels and meals while she is there?" Morrissey asked. "I wish I could be there, but someone has to take care of the two boys who go to school and I have to be there for them. And I have to work somehow."
"There isn't enough support available unless you have a lot of money," he said. "My wife can't work -- she's been with our daughter 24/7. I work on commission -- it's an incredible stress."
Morrissey has begun to write a book, "In Search of Dignity," to share his struggle with others. But, he said, "it never has an ending."
ABC's Dr. Rebecca Chasnovitz contributed to this report.
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