Every weekday, Betsy Langston makes a 90-minute drive with her son to Myrtle Beach, S.C. Then, after about three hours there, she drives the same 90 minutes back home to Florence.
That's $20 a day in gas, not to mention the wear on her station wagon and herself. "It gets really tiring,'' Langston says. But the trip is well worth it, she adds. Pierce, 3, goes to a clinic in Myrtle Beach where he receives intensive therapy for his autism.
Pierce has made big strides for the past year through applied behavior analysis (ABA) treatment. "He went from having only two words to now having spontaneous phrases,'' Langston says. "When we go out to eat, we can ask him what he wants.''
His meltdowns have decreased in severity. Before ABA, she says, "I was a prisoner of the house. I would have to wait till my husband came home to go shopping.''
The family's new insurance coverage also has made a huge difference.
Autism is a brain disorder that often makes it difficult to communicate and relate to others. The Centers for Disease Control and Prevention estimates that 1 in 110 U.S. children have an autism spectrum disorder.
ABA, an intensive one-on-one therapy, can be expensive, running $50,000 a year or more. Mounting bills have put many parents of children with autism in a deep financial hole. "So many families live in debt because their insurance doesn't cover it,'' Langston says.
But fortunately for the Langstons, their coverage for autism services recently expanded. Other families also have seen new benefits for the disorder, as a growing number of states have passed legislation requiring insurance policies to cover autism treatment.
The advocacy organization Autism Speaks says that 19 states have passed legislation on autism coverage, with 18 of them coming in the past three years. Some laws have age limits, while others have caps on annual spending, says Peter Bell, an executive vice president of Autism Speaks.
The state laws don't apply to large employers that self-insure their benefits. Wayne Langston, Pierce's father, works for a biotech company that falls into that self-insuring category. Yet the company enhanced its coverage of autism a year ago. Meanwhile, South Carolina passed a requirement of autism coverage for employers with more than 50 workers.
Several self-insured companies have adopted broader autism coverage, including Microsoft, Home Depot and Intel, according to Autism Speaks.
Insurance and employer groups, however, assert that these benefits mandates are another cost driver that helps balloon their health insurance premiums. The Council for Affordable Health Insurance estimates that an autism mandate adds 1% to the cost of coverage, and could eventually reach 3%. The National Federation of Independent Business has opposed autism coverage bills in state legislatures, arguing that the increased cost would lead small businesses to drop health insurance.
Still, researchers say that intensive behavioral therapy, though costly, can save money by subtracting years of special education costs.
Studies show about half of autistic children receiving intensive therapy show major improvement, says Jason Baker of the Waisman Center, a research center for developmental disabilities at the University of Wisconsin at Madison.
"The earlier we can intervene, the better the outcomes can be,'' says the center's Rachel Fenning. She and Baker point to long-term savings with the therapy.
Yet access to such services varies throughout the country, Fenning says.
South Carolina doesn't have an adequate supply of good therapists, says Betsy Langston. That's why she gets up at 5 a.m. and leaves the house at 7 a.m. for her long day of driving.
"You do what you have to do,'' she says. Pierce, she notes, "learns something new every day.''
And without insurance coverage, the family's bill for the ABA services would run about $25,000 a year, Betsy estimates. Without that help, she says, "We would be in a lot of debt.''
Coverage for Autism Crucial for Families