
Courtesy ABC News
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.