Like most dads, John Cooke would have done anything to save his daughter.
He was lucky he had the money. To make her well, to make his teenager want to live and stop planning her suicide, Cooke and his wife would end up paying $150,000.
With each denial from the family’s insurance company, the Cookes wrote another check. When the company deemed it no longer “medically necessary” for their teenager to stay in a residential treatment center in Wisconsin, or another center in Utah, the Cookes paid out of pocket until the doctors said she was well enough to come home.
Throughout the year-long saga, Cooke, a marketing consultant, wondered more than once how absurd the company’s denials would sound if his daughter had another kind of life-threatening disease — not one of the mind, but the body. Would they, he thought, say she had reached her limit on treatment for cancer or diabetes?
It has been more than a decade since the federal Mental Health Parity and Addiction Equity Act was passed in 2008, mandating that insurance companies provide the same coverage for illnesses of the brain as for physical conditions — if they offered mental health benefits. The Affordable Care Act, commonly called Obamacare, went further, requiring insurance companies to cover mental health care and addiction treatment beginning in 2014.
But that’s on paper. In real life, mental health parity in insurance is not happening, according to multiple research projects and the stories of those who try to get coverage for treatment of depression, anxiety and addiction. Insurance companies in Colorado pay mental health doctors 30 percent less than they pay other medical professionals, and consumers have to pay for out-of-network care seven times more often than they do for other medical care.
“It’s the law of the land, but it’s not really happening,” said Dr. Carl Clark, CEO of the Mental Health Center of Denver.
The reasons for the disparity — set in place decades ago, when mental health care was isolated from the rest of health care — are multiple. Determining what is “medically necessary” in mental health is more loosely defined than in the rest of medicine. Federal and state regulators are often too overburdened to enforce parity laws. Also, there is a shortage of mental health professionals, and only a portion of them contract with insurance companies because they can make more money accepting direct payment from patients.
Those in the business use the term “ghost network,” meaning an insurance company might provide a long list of mental health providers in network, but hardly any are actually accepting new patients.
In Colorado, which passed its own parity laws in 1997 and 2007, legislation introduced this week would add more teeth. House Bill 1269 aims to close loopholes and force insurance companies to provide proof to state officials that they are complying.
“The reason that we have different types of health insurance — for physical and mental health — is because we made it that way in the 1960s,” said Dr. Benjamin Miller, chief strategy officer for the Well Being Trust, a foundation that focuses on mental health. “We are trying to right a wrong.
“It’s 2019, for heaven’s sake. It should not be separate.”
Miller urged lawmakers to “stand up and say this is a priority to enforce” and noted that many people do not even realize parity in mental health coverage is even a law.
“Most people don’t have the resources or the time to figure out what is going on,” he said. “It’s the cruelest irony — the people that need care the most have to work the hardest to get it.”
For the Cookes, the turmoil began when their eighth-grader was so full of anxiety that she would no longer go to school. They tried homeschooling. They tried therapy, paying extra for psychologists and psychiatrists because there were no “in network” doctors accepting new patients in their hometown of Boulder.
The Cookes’ daughter — who did not want her first name used in this story — planned to return to school at the start of her freshman year, but as the date approached, she was so anxious and suicidal that she instead ended up in the adolescent psychiatric unit at Children’s Hospital Colorado.
After about a week at Children’s, the girl started high school. But by winter break, she was back in emergency treatment, this time at Centennial Peaks Hospital in Louisville, where the doctors stabilized her and recommended long-term treatment elsewhere.
There were no beds available in the entire state of Colorado, so the Cookes sent their daughter to a hospital in Wisconsin. To find the spot, they paid a Boulder consultant whose job is to find residential treatment centers for kids. The woman found three options: in Texas, Massachusetts and Wisconsin. “It’s ridiculous,” Cooke said. “You are in crisis mode and just trying to figure out where to go, what to do and how to get help for your daughter.”
Two months after she started treatment in Wisconsin, the Cookes received a letter from their insurance company stating it would no longer pay. The girl was well enough to go home, the letter said.
The teenager’s doctors disagreed, telling her parents that while her suicidal thoughts had subsided, they still needed time to treat the underlying anxiety that was causing her struggles; otherwise, she probably would spiral again. The Cookes paid for her to stay another month, at $10,000 per week. After four weeks, they found a less-expensive program in Utah, for $10,500 per month. The bill for the Utah program was more than $80,000 for eight months.
All the while, Cooke’s wife, Laurie, spent “hours upon hours on the phone” arguing with the insurance company. “We almost gave up,” he said.
Just as they had hired a consultant to help them find a treatment center, the Cookes needed outside help to fight their insurance company. “There are companies out there whose job is to fight insurance companies, another ridiculous thing we need because of our insurance system,” Cooke said. For this, they paid about $5,000.
The Cookes appealed three times, sending the issue to arbitration. The arbitrator sided with the Cookes, forcing the insurance company to reimburse them for their daughter’s treatment. The decision came nearly a year and a half after the company’s first denial, and the money followed a few months later, one check at a time.
“How many people could afford to wait that long?” Cooke said. “It sure seems like their approach is to drag out the process and wait for you to give up. I’m sure most people do.”
It scares — and angers — him to think what would have happened if they hadn’t had the money to pay. “All told, we spent more than $150,000 out of pocket in order to get her better. We were able to do this; 95-plus percent of Americans wouldn’t be able to do this,” he said.
The Cookes’ daughter, now 18 and a high school senior, is doing “amazing” and planning to start college in the fall, Cooke said. School still brings on anxiety, but “she has the tools now to deal with that,” he said.
It’s a dramatic change from the girl’s middle-school and early-high school years, when she was harming herself and planning how to die. “If she had come home when the insurance company had thought she should, I don’t think we would have gotten out of that cycle,” Cooke said.
At Children’s Hospital Colorado, a team of staffers spends hours each day trying to get coverage approved by insurance companies for children with mental health issues. Before parity laws, they fought to get coverage for certain diagnosis, including anorexia and bulimia. Today, the arguments are over whether more days in the hospital or sessions with a therapist are “medically necessary.”
“It’s a costly layer in medicine,” said Jennifer Hagman, a psychiatrist and medical director of the eating-disorders program. “It’s an active part of every case, knowing where the insurance stands and how many days we have and asking for days and sessions. It does still seem like mental health care is reviewed in a different way.”
Insurance companies sometimes shut off coverage for children with mental health issues that are chronic — as in “This child has been suicidal for a year and these therapies aren’t helping, so we will no longer pay.”
“Gosh, you would just not hear that with a kid with diabetes,” said Hagman, who, as a member of the Colorado Psychiatric Society, helped draft this year’s parity legislation.
A Kaiser Permanente spokeswoman said the company regularly reviews its benefit plans to make sure they’re in compliance with parity laws.
Aetna, one of Colorado’s largest insurers, said that since the federal parity law, the company has been able to eliminate limits on mental health coverage, reduce out-of-pocket expenses for customers and expand the number of mental health providers in network.
Still, the company said in a statement, “we are, in many ways, only beginning to see the promise of this law.” For one thing, insurance companies don’t typically know if their in-network doctors have stopped taking patients. Doctors would notify the company if they stopped taking their insurance, but they would not let them know if they weren’t taking patients, said Aetna spokeswoman Anjie Coplin.
Since the federal parity law was passed by Congress, the number of behavioral health professionals nationwide has decreased about 14 percent. For every new psychiatrist, two are retiring. In Colorado, the average age of a psychiatrist is 60. With a shortage of providers, many therapists can earn more money taking cash payments from patients instead of accepting reimbursements from insurance companies.
An insurance company’s website might offer a long list of in-network mental health doctors, but that doesn’t mean mental health care is available.
“When you call the providers, you get the same voicemail from every single one, which says, ‘I’m not taking new patients,’” said Clark, the Mental Health Center of Denver executive. “A lot of people just give up. They call and they call and they give up.”
Some of Clark’s friends have called him for advice, and he has agreed to look at the providers on their insurance company’s list. “Sometimes, I will call if I see a friend of mine on the list, and I have asked them to take just one more person,” he said.
The Division of Insurance doesn’t have the ability to call every number and find out who is taking patients and whether the plan is adequate, Clark said. “I don’t think the insurance commissioners have the tools that they need to hold insurance companies’ feet to the fire,” he said.
Here is Clark’s “personal fantasy”: a hotline for people who need mental health care. A live person would answer the phone, talk to the caller about their insurance plan, refer to a list of providers who are actually taking patients and help the caller make an appointment.
“If you are very wealthy, you have access to behavioral health care,” Clark said. “If you are very poor and can get into the safety-net system, you can get good care. Everybody in the middle? It’s pretty much not there.”
The Colorado legislation, called the Behavioral Health Care Coverage Modernization Act, would require insurance companies to submit an annual report on mental health parity to the state’s insurance commissioner. It also says:
— The insurance commissioner would have authority to disallow a company’s rate increase if the company does not show compliance with parity law.
— Beginning in January, insurance plans that include an annual physical checkup also will have to cover an annual mental-wellness checkup.
— The state Medicaid insurance plan for people who are needy or have disabilities will have to cover mental health and substance-abuse disorders with the same benefits as other medical issues.
— Insurance companies must provide coverage for all mental disorders. Current parity law leaves out several diagnosis, including attention-deficit disorder and Tourette syndrome.
— Plans must cover prescription drugs to treat substance use disorders without prior authorization or stipulations.
“We have to have enforceability,” said Rep. Lisa Cutter, a Democrat from Morrison who is co-sponsoring the measure. “A lot of these things are already on the books.”
State law passed last year created a behavioral-health ombudsman, who in December started collecting complaints about mental health coverage.
“We hear these kinds of complaints day in, day out — stories of families whose loved ones are denied the care they urgently need, of people being placed on waitlists with no end in sight or having to drive hours upon hours just to get care. And keep in mind we’re talking here about people who have health insurance,” said Moe Keller, director of advocacy at Mental Health Colorado, which helped draft the legislation.
“What’s frustrating is we’ve had parity laws on the books for more than two decades now. The legislature shouldn’t have to continually revisit this issue to basically say, ‘We really meant it the first time we passed it.'”
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