It's been nearly two years since Massachusetts passed one of the strongest laws in the nation mandating that insurers provide coverage for the diagnosis and treatment of autism, without any annual or lifetime limits on the amount of coverage. Yet some of the state's biggest employers -- including Boston University and Harvard -- don't provide coverage for therapeutic services that can cost families tens of thousands of dollars every year.
They don't have to under the state's ARICA law because they're self-funded plans that are regulated by federal law and not subject to state law. The federal government added autism coverage to its benefits package for federal employees last June.
Some Boston-area companies with self-funded plans such as Partners HealthCare, Tufts University, Iron Mountain, the Lahey Clinic, State Street Corporation, and Ocean Spray have opted to include autism coverage in their health plans. Others, though, seem to be dragging their heels.
"Places like Harvard and BU don't provide coverage for their employees, but they were part of the [Autism] Consortium that testified in support of the state legislation mandating coverage," said Judith Ursitti, director of state government affairs at Autism Speaks, a non-profit advocacy and research group. "It's ironic hypocrisy."
Boston University physics professor Anatoli Polkovnikov told me that he can't afford to pay the $3,000 per month for the behavioral therapy sessions that his 11-year-old son, Ilya, needs. "We have Blue Cross Blue Shield, which covers speech therapy and physical therapy, but that's pretty much it," he said.
Ilya is at the low-functioning end of the autism spectrum. Although sweet-natured and not aggressive, Ilya has a range of behavioral issues such as wandering away from his parents at the mall, said his mother Irina. "He needs to learn how to stay with us when we're outside the house, how to spread butter on bread, how to bathe himself, and go to the bathroom," she added.
Research suggests that applied behavioral analysis or ABA therapy is one of the few effective therapies for teaching kids with autism such basic life skills. But the Polkovnikovs said it would cost them $102 for each two-hour session, and their son would require 10 hours a week. That's in addition to the specialized schooling he gets through the Newton public schools.
Anatoli Polkovnikov said he's been through the rounds with the human resources department at the university, but to no avail, and now they've stopped responding to his e-mails.
"Boston University provides good and generous employee benefits," said spokesperson Colin Riley, though he confirmed the university does not provide coverage for autism therapies to its employees. "We frequently review the benefits offered to see if we can improve them." Riley wouldn't predict whether autism coverage would be included in the future.
Over at Harvard, Dawn Miller, a parent of a child with autism who works in the university library, wrote a scathing column in the Harvard Crimson last September citing research from her own institution supporting insurance coverage. "Harvard employees and their families remain without access to the unlimited and intensive therapeutic and rehabilitative care (particularly Applied Behavioral Analysis) which has been deemed necessary by Harvard's very own medical researchers," Miller wrote.
She cited a 2006 Harvard study that estimated the societal cost of not treating a child with autism to be as much as $3.2 million over that individual's lifetime.
"Harvard University's medical plan covers the diagnosis and treatment of autism spectrum disorder, but Applied Behavior Analysis services are not covered," Harvard spokesperson Kevin Galvin said in an emailed statement.
After the state law was passed, Galvin added, the university reviewed its coverage and "decided to continue to provide its current care as detailed in its medical plan, as was permitted for organizations with self-insured medical plans."
Ursitti said her group and others have been working with employers to try to convince them that premiums won't rise by much if they add autism coverage. One analysis of two years of data from states that implemented coverage laws before Massachusetts found that premiums rose by 22 cents per member per month after autism therapies were added.
"It's really not the astronomical cost that's projected by health plans," Ursitti said. That's because therapy costs vary depending on the severity of the condition. "I have two kids on the spectrum," Ursitti said. "One is very challenged and needs a lot of services, while the other has Asperger's and isn't currently accessing any services at all."