(OMAHA, Neb.) — 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 on Monday 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 ABC News. “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.
Copyright 2013 ABC News Radio