Autism: more treatable than billable ?
But a part of Ms. Lorri 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."
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.
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.