Although autism disorders cause developmental disabilities in one of every 110 American children, many health insurers have refused to cover certain autism treatments. As a result, an ever-growing list of states have mandated autism insurance coverage -- despite concerns that such mandates may raise the cost of health insurance for everyone.
While there is no known cure for autism, a brain disorder that can affect communication and social interaction, it can be treated in a variety of ways, including speech therapy, occupational therapy, physical therapy and a program called Applied Behavioral Analysis (ABA).
Some health insurers contend that they should be responsible for the physical treatments for autism, but not for therapies such as ABA, which they consider to be educational in nature.
But autism advocates disagree.
“Autism is a neurological disorder, and there are evidence-based treatments for it,” says Judith Ursitti, regional director of state advocacy relations for Autism Speaks, an organization that promotes awareness and research into the disease. “Health plans must catch up with the awareness and the science that has evolved over the years and the treatments that have become available.”
At stake are the billions of dollars each year it costs to care for all Americans with autism. According to the Council for Affordable Health Insurance, the annual cost of treating one child with autism can reach $50,000 or so. For parents already struggling with a child’s autism diagnosis, the price tag can be devastating.
Ursitti learned that her son Jack had autism five years ago, when he was 2. “He was unable to speak and unable to gesture, so his whole communication system was paralyzed,” she says.
Ursitti remembers feeling a glimmer of hope when she heard about therapies available to treat the disease.
“My doctor was prescribing them, but when I went to my health insurer, they balked and said, 'We don’t cover autism,’” she recalls. Alhough she and her husband were able to come up with the $60,000 a year for Jack’s treatments at the time, Ursitti recalls one day talking to two other sets of parents who didn’t have the money. “They were selling their homes to pay for treatment,” she says.
States stepping in
In the past few years, the issue of autism insurance coverage has been a hot button for state lawmakers. Twenty-three states now require health insurance companies to cover treatments for autism. The most recent states to join that list are Iowa, Kansas, Kentucky, Maine, Massachusetts, Missouri, New Hampshire and Vermont, all of which passed such legislation in 2010.
According to Autism Votes, an offshoot of Autism Speaks that coordinates support for federal and state legislative efforts, autism insurance initiatives have been launched in 24 states and the District of Columbia. Only Oklahoma, Utah and Wyoming don't have autism insurance laws on the books and don't have autism insurance legislation on tap.
Opponents of state-mandated autism insurance coverage say that such coverage will cause everyone’s premiums to rise. The Council for Affordable Health Insurance estimates that an autism mandate leads to a 1 percent rise in health insurance costs. Since the incidence of autism has increased in recent years, the organization says the increase in costs could increase to roughly 3 percent if current trends continue.
Bret Jackson, a spokesman for the Michigan Health Purchasers Coalition, an organization made up of business associations and insurance providers that oppose the notion of mandated autism insurance in Michigan, says the opposition has nothing to do with the disease itself.
“It’s not that we’re against parents of children with autism having health insurance coverage,” Jackson says. “We’re opposed to all mandates. It should be up to the purchaser to decide what benefit they want to purchase, because they know what types of coverage are best for them.”
Another complication in the issue of mandated autism coverage is that laws apply only to state-regulated plans, not self-insured plans. Most large companies with more than 1,000 employees operate self-insured plans, says Karen Fessel, founder of the Autism Health Insurance Project, an autism advocacy organization in California. “They might pay Aetna or Blue Cross to administer the benefits, but since the employer is paying for the benefits, the employer decides what to pay for," Fessel says.
Self-insured plans fall under the Employee Retirement Income Security Act (ERISA), so they’re regulated by the U.S. Department of Labor.
Other insurance options
For those parents whose health insurance companies don’t cover autism, some options are at their disposal:
• If health insurance is provided through a large employer that is self-insured, Fessel suggests that parents with autistic children get together and appeal to the benefits administrator to add autism coverage. “Let them know that people will be less productive in the workforce if they’re busy trying to coordinate their children’s lives during work hours,” Fessel says.
• Some insurers offer autism riders that cover certain treatments, which can be purchased on top of traditional health insurance. Although advocates say riders are in no way comparable to full autism coverage as part of a traditional health plan, a rider could provide financial relief to a family in a state where no other options exist.
• Some self-insured employers may offer employees the option of picking a low-end HMO plan that’s state-regulated, Fessel says. For those in a state that mandates coverage, that’s the way to go.
Experts don't expect a federal mandate for autism insurance anytime soon, particularly since there's still so much controversy surrounding federal health care reform. Nonetheless, Ursitti believes more states will require coverage once they see that the mandates aren’t costing as much as opponents feared they would. “I think we will build momentum even more if states see it working,” she says.