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Kids and Anxiety: North Jersey family battles insurance company for daughter's care


It was not a choice Rob and Joyce Mortorano ever thought they'd have to make.

"We couldn't afford our house, the medical bills were getting out of control," he said. "We made a very conscious decision."

They would continue to get mental health treatment for their daughter, a preschooler at the time. They knew, at that point, if they kept paying her doctor, they couldn't pay their bills. They would have to sell their Hackensack home.

"It's not my proudest moment," Mortorano said of that time a couple of years ago.

But some would argue that this should be these parents' proudest moment, the day that they looked at their situation and said they would do whatever it takes to keep getting their child the care she needed — no matter how it changed their lifestyle.

The couple's daughter, whom they do not wish to have named, was diagnosed with selective mutism. Once known as elective mutism, selective mutism is an anxiety disorder characterized by a child's or adolescent's inability to speak in one or more social settings — at school, in public, with adults — despite speaking comfortably in other settings such as at home.

The psychologist treating Mortorano's daughter cost about $250 per session. That's an extra $1,000 a month. They were going once a week for about six months when they realized they couldn't make it work financially.

"It took over our lives and it continues to, because it's ongoing," Mortorano said of his child's anxiety disorder as well as the life-changing cost of treatment.

Cognitive behavioral therapy (CBT), the recommended treatment for anxiety disorders, is not cheap. A thorough evaluation at a clinic or center, which can take three or four hours, may cost thousands of dollars. While CBT is designed to be completed in four to five months, it can take longer depending on the child and if there are multiple anxiety issues.

Other forms of therapy are more open-ended. A 20-week treatment program can cost an estimated $5,000. A year of weekly sessions could total approximately $13,000 or more. Out-of-network deductibles often leave families paying thousands of dollars out of pocket before any benefit level kicks in.

There also may be some children for whom CBT alone doesn't work. A recent study showed that 60 percent of patients receiving CBT showed improvement; that number improved to 81 percent when CBT was combined with medication. If medication is involved, there is not only the cost for the drug, but likely also for an additional physician to monitor the child for possible side effects, as well as effectiveness.

Diagnosed at age 3

Families throughout North Jersey are forced to balance getting proper treatment for their child's mental health condition with crippling out-of-pocket costs, whether they have insurance or not. The Affordable Care Act and Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 require health insurers and group health plans to provide the same level of benefits for mental health treatments and services that they do for medical and surgical care. Finding properly trained people in-network can be difficult, however, and the out-of-network reimbursement remains limited at best for most.

When their daughter was diagnosed at age 3, the Mortoranos did extensive research and sought proper care. Most therapists told them they wouldn't work with her until she was at least 5 years old. They found two therapists with experience in selective mutism. Both were out-of-network. When they learned what it would cost, Mortorano asked the insurance company to find a qualified therapist in-network.

"They called us back after a week and said they had no one," he said. "We tried to argue that since they could not provide someone in- network, they shouldn't limit the amount they give back to us. They told us that there was a formula and that it didn't matter that they couldn't find someone."

Plans are actually required to provide service if there is no in-network provider in the geographic area or with time to see a patient, according to Wardell Sanders, president of the New Jersey Association of Health Plans.

"There shouldn't be cases where folks can't find a provider," Sanders said.

It's called an in-network exception for a single-case agreement: The insurance company must find and contract with an out-of-network provider. The family cannot pick the provider. The need for a specific specialist can be a case for an agreement; however, the rules are tricky.

For example, one insurance company's single-case agreement is possible when there is no clinical specialist in-network. However, the company will not grant exceptions based on the therapist's modality (for example, if a family wants CBT or psychoanalysis or art therapy etc.), and the insurance company decides whether a particular provider can provide "appropriate treatment" for the diagnosis.

'What insurance?'

These limitations leave families choosing to pick the provider they believe is the best and trying to figure out a way to handle the financial ramifications. Some get help from family members when possible; others take out loans. One Bergen County family recently was forced to change their daughter's therapy sessions from once a week to once every two weeks despite the fact that the fifth-grader is struggling at the moment.

"What insurance?" the father asked when the topic was brought up.

The deductibles are so high, that dad laments, that the family doesn't see any money until the end of a year, and then it's only 20 percent of the cost of one visit. It's as if they don't have insurance at all, he said.

This is a struggle families have been having for decades. In the mid-1980s, Herb Ouida had a good job and good insurance, according to his wife Andrea, but they were forced to take out a second mortgage on their River Edge home to cover son Todd's sessions with a psychiatrist for his severe anxiety.

Doctors defend their out-of-network status by saying they couldn't stay in business the way insurance companies reimburse.

"In terms of the insurance issue, that's very, very complicated," said psychiatrist Lisa Kotler, medical director of the New York University Child Study Center in Hackensack.

"We — and most practitioners in Bergen County and throughout the U.S. — are out-of-network in mental health because of a very, very poor reimbursement that mental health has in our country. Despite all these insurance equality laws which say it's illegal to reimburse mental health differently than physical health, it seems like they are still doing that. So what a lot of more highly skilled places, including NYU, have done is made business decisions [not to be on insurance plans]. They're going to get $12 a session from the insurance, and they can't afford to do it."

There will always be these complaints from consumers and providers, according to Sanders.

"Health plans live in a world between the customers who think the plans are too expensive and their supply chain, the providers, who want to be reimbursed more," he said. "There's always that tension."

The in-network mental health services tend to offer what Kotler calls "supportive" services. They are typically social workers with no training in the therapies used to help with anxiety, she said.

"They don't have that background. It's very unfortunate," she said.

Kotler's team will help families choose from a list of in-network specialists if necessary. Those who choose to go to the Child Study Center will get the necessary paperwork and diagnostic codes to file for out-of-network reimbursement. Most private therapists offer that.

Feeling of futility

The Mortoranos chose one of the two out-of-network doctors. They were told insurance would cover 80 percent of what the insurance company deemed to be "appropriate" charges for care. The reimbursements ended up being somewhat random amounts that couldn't be counted on to come with regularity — $20 one month, $44 a couple months later; every once in a while they would get more, but never enough to make a real difference.

When asked why some checks were more than others, they never got "a direct answer," only the repeated explanation that the insurance company paid what it deemed "appropriate," Mortorano said.

Despite the frustration and feeling of futility, Mortorano kept calling, kept trying to get more help, more money, a better understanding of the reasoning behind the reimbursements.

"They break you down," Mortorano said of the insurance company. "That's their job and they do it well. I respect them for that."

One particular conversation shocked and infuriated Mortorano, who said the woman on the phone told him, "Go once, learn what he does, and you can do it at home."

"I said, 'Do you say that to someone going to the cardiologist?' " Mortorano said, retelling the story. "She said, 'Sir, that's ridiculous.' I said, 'No ma'am, you're ridiculous. The fact that you made that statement is ridiculous.'"

Mortorano is appalled at the systemic and social stigmas and lack of support for those with a mental health condition.

"If someone is in a wheelchair, you wouldn't say, 'Get up and walk across the room,' " he said. "For people with anxiety, why are we yelling at them to get over it? Why are we not supplying the support?"

About six months ago, Mortorano and the others who have his insurance plan were told that the reimbursement policy for mental health was changing. They could resubmit old claims to get money back they were owed.

Now, as their daughter has recently changed to sessions once every two weeks thanks to her progress, those appointments cost the family $88 out-of-pocket. They were also reimbursed for the last six months, so those visits totaled $88 out-of-pocket as well. Living in an apartment in Wyckoff, Mortorano said even with this welcome and helpful cost difference, they are far from being over their financial issues and getting back to where they were before. They just paid back a loan on his pension. They can't even think about a down payment for a house.

"We live paycheck to paycheck," he said.

While many might shy away from publicly airing their financial woes, Mortorano said he is telling their story in hopes it can be an impetus for change. He is ready to help any way he can.

"I'll go to Washington," he said. "I'll help anybody that possibly needs help. People don't know what to do to go about finding help. … The only way there is going to be change is if people speak up."

How families can get help in keeping treatment costs down

Anxiety disorders are treatable, yet only one-third of those diagnosed receive treatment, according to the Anxiety and Depression Association of America (ADAA). Often the costs of cognitive behavioral therapy — the recommended treatment for anxiety disorders — and prescription drugs deter people from getting the help they need, the organization says. The ADAA offers the following advice and list of resources for those in need of low-cost treatment.

  • Ask about a sliding scale or other payment options when you call or visit for a consultation. Many therapists will work with families to try to create an affordable treatment plan. If the therapist is unwilling, move on to another.
  • Some colleges and universities offer low-cost therapy for anxiety disorders and other mental health problems. Call the psychology, psychiatry or behavioral health department and inquire about sessions with graduate students, who are supervised and can provide services at a lower cost as they gain counseling experience.
  • Federally funded health centers can also be a good resource for those without health insurance or with a limited budget. You pay what you can afford, based on your income. Many of these centers include mental health services. Info:
  • Use community crisis care services (usually run by a local health department) for people facing a mental health crisis. Staff typically will help over the phone and can connect people to affordable, appropriate care.
  • See if you have an employee assistance plan (EAP), an employer-paid benefit separate from a medical plan, meant to provide short-term assistance. Typically, employees can get limited free counseling sessions.