Dale W. Ferrell for The New York Times
Lorri Unumb with her husband, Dan, and their three sons, from left, Christopher, 8; Jonathan, 5; and Ryan, 11.
Insurance covers more mental health care than many people may realize, and more people will soon have the kind of health insurance that does so. But coverage goes only so far when there aren't enough practitioners who accept it — or there aren't any nearby, or they aren't taking any new patients.
In the days after the Newtown, Conn., school shooting, parents and politicians took to the airwaves to make broad-based proclamations about the sorry state of mental health care in America. But a closer look reveals a more nuanced view, with a great deal of recent legislative progress as well as plenty of infuriating coverage gaps.
The stakes in any census of mental health insurance coverage are high given how many people are suffering. Twenty-six percent of adults experience a diagnosable mental disorder in any given year, and 6 percent of all adults experience a seriously debilitating mental illness, according to the National Institute of Mental Health. Twenty-one percent of teenagers experience a severe emotional disturbance between the ages of 13 and 18.
According to this year's Society for Human Resource Management survey of 550 employers of all sizes, including nonprofits and government entities, 85 percent offer at least some mental health insurance coverage. A 2009 Mercer survey found that 84 percent of employers with more than 500 employees covered both in-network and out-of-network mental health and substance abuse treatments.
For now, some people who have no health insurance or who buy it on their own may avoid purchasing mental health coverage too, or may avoid seeking treatment for things like addiction or depression. This happens for many of the same reasons that there has historically been less mental health coverage than there has been for other illnesses. The earliest objections among insurance providers and employers had to do with whether mental disorders existed at all, according to Howard Goldman, a professor of psychiatry at the University of Maryland school of medicine. Then there were questions about whether treatment actually worked. Next, concerns arose over cost and how often people would avail themselves of costly mental health treatments.
But a subset of adults who have good insurance coverage still avoid treatment for mental illness to this day, according to Edward A. Kaplan, senior vice president and national practice leader for the Segal Company, a benefits consultant that works with many unions. "Culturally, a lot of people driving trucks don't believe in it and suffer through," he said. "And a lot of transport unions don't trust employers and think they will look at it and use it to retaliate against the workers."
For many of the people who do have mental health coverage, there is now a bit more of it at a lower cost than there might have been five years ago, even if mental health insurance over all remains much less generous than it was many years ago when employees did not pay as much out of pocket. That's because a 2008 federal law requires employers with more than 50 employees that do offer mental health coverage to have no more restrictions than there are for physical injuries or surgery, and no higher costs.
This so-called parity bill now applies to a crucial provision of President Obama's Affordable Care Act. Insurance plans in the exchanges that will offer health coverage to millions of uninsured individuals starting in 2014 must cover many items and services, including mental health disorders and substance abuse.
The combination of parity and expanded care is crucial, according to Anthony Wright, the executive director of Health Access, a consumer advocacy organization in California. After all, parity doesn't do much good if the mental health coverage need only be equivalent to a meager health insurance plan that covers very little.
Then again, what good is parity in mental health insurance if you can't get the treatment you need? Plenty of psychiatrists in private practice accept no insurance at all, though it is not clear how many; their professional organizations claim to have no recent or decent data on the percentage of people in private practice who take cash on the barrelhead, write people a receipt and send them off to their insurance company to request out-of-network reimbursement if they have any at all.
According to a 2008 American Psychological Association survey, 85 percent of the 2,200 respondents who said they worked at least part time in private practice received at least some third-party payments for their services. That doesn't mean they take your insurance, though.
Nor does it guarantee that they or other mental health practitioners are anywhere near you or have any imminent openings for appointments. This can be a challenge for people who live far from major cities or big medical centers and need treatment for mental illnesses like severe depression or schizophrenia or disorders like autism.
But it is a particular problem for parents of autistic children who need specialized treatment that is relatively new or that not many people are trained to do. Amanda Griffiths, who lives in Carlisle, Pa., and is the mother of two autistic boys, called 17 providers within two hours of her home before finding one who was qualified to evaluate her younger son and was accepting new patients his age.
"No amount of insurance is going to magically make a provider appear," she said.
And it remains a struggle to persuade insurance companies and employers to cover treatment that is new or expensive, even if it's likely to be effective. Ira Burnim, legal director of the Bazelon Center for Mental Health Law, points to something called assertive community treatment, a team-based approach that has proved useful for adults with severe mental illness and holds promise for children, too. There, the challenge is to define what kinds of interaction with a patient outside of an office setting is billable and write rules for coverage.
Autistic children can benefit from an intensive treatment called applied behavior analysis, but many insurance companies haven't wanted to cover what can be a $60,000 or $70,000 annual cost. They claim that the treatment, which can include intensive one-on-one interaction and assistance with both basic and more complex skills, is either too experimental or an educational service that schools should provide. This can be a tricky area for parents to navigate, because it isn't always clear which part of an overall health insurance policy ought to cover various possible treatments.
A law school professor named Lorri Unumb faced a bill that big several years ago when her son Ryan was found to be autistic and she discovered that her insurance would not pay for treatment. After moving to South Carolina and meeting families there who had not been able to afford the therapy, she spent two years persuading state legislators to pass a law that forced insurance companies to pay for the treatment. "I did not really know how to write a bill," she said. "I had watched 'Schoolhouse Rock' before, and that was kind of my inspiration and guidance."
Autism Speaks, a national advocacy organization, saw what she accomplished and hired her to barnstorm the country in an effort to get similar laws passed. There are now 32 states that have them, though there's a crucial catch: they don't apply to the many large employers who pool their own resources in so-called self-funded insurance plans.
If you work in such a company, it may be up to you to lobby your human resources department to cover applied behavioral analysis or whatever mental health therapy you or your child may need. Sometimes a personal appeal will succeed; Mr. Kaplan, the benefits consultant, noted that when a parent called about a child, an employer might be particularly sensitive.
But a part of Ms. Unumb's job these days is to assist parents with appeals where employers have said no or appear likely to. She has accompanied parents to meetings with their human resources departments all over the country to request that the employer expand coverage for everyone. She has a 115-page presentation that she draws on, pointing out that at its core, autism is a medical condition diagnosed by a doctor, the very thing health insurance is supposed to cover.
At $60,000 or more annually for children with particularly acute treatment needs, the coverage does not come cheaply. But Autism Speaks estimates that that expense, spread over thousands of employees, raises premium costs 31 cents a month.
Ms. Unumb notes that for many autistic children, intensive early intervention can allow them to function in mainstream classrooms and prevent a host of problems there and once they finish school. "You pay for it now or you pay for it later," she said. "And you pay for it a lot more if you choose later, in more ways than just financial."
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