Moving out of state to get autism treatment
Before Wendy Radcliff agreed to marry Scott Finn, she made it clear they would have to live in her home state of West Virginia.
Politically active, Radcliff loved West Virginia and wanted to spend her life there, helping to make it a better place. The couple married, had a son, Max, and built their life together in Radcliff's hometown of Charleston.
Then, just before his second birthday, Max was diagnosed with autism.
Radcliff had insurance -- good insurance, she says -- through West Virginia's Public Employees Insurance Agency, which she received through her work for the state. But although PEIA paid for the autism diagnosis, it would not pay for the prescribed treatment -- applied behavior analysis, or ABA. There are a similar models that go by different names, but ABA is by far the best-known.
ABA is typically administered one on one, in a program that is customized to the individual. It involves breaking down learning tasks into small steps, and teaching them over and over in a reinforcing way until they are mastered.
It is the best-researched and most effective current treatment for autism, experts say.
By the time Max was 4, Radcliff and Finn were spending $750 to $1,000 a week to treat Max.
"Our credit cards were being used to pay for things that they shouldn't be paying for, like groceries and utility bills, because we were spending any cash we had on our therapists," says Radcliff.
And even then, they struggled to get the right therapy, Radcliff says.
"In West Virginia, because insurance will not cover ABA, it's very difficult to find people that know and are trained in how to do ABA -- they're just not available and around because of that," says Radcliff.
They cobbled together a few hours a week of basic ABA therapy, sometimes administered by inexperienced, overwhelmed or noncertified therapists. At one point, desperate for help, Radcliff even had her brother trained to administer a few hours a week of basic ABA therapy, she says.
"We only knew of a couple of ABA therapists even in the Kanawha Valley where we lived. And [they] were being overused by people -- they just didn't have enough hours in the day."
Research suggests any child with autism, regardless of severity, has an equal chance at "best outcome" if the child completes an ABA program (average is three years to completion) that starts before the age of 3 1/2, says Kristi Oldham, program director for the Lovaas Institute Midwest Headquarters in Minneapolis, Minnesota, which provides early intervention services for kids with autism.
Sixty-seven percent of such children can expect a "best outcome," which Lovaas defines as a child who is mainstreamed in a classroom without additional support, has no diagnoses on the autism spectrum and has a typical IQ, Oldham says.
And yet PEIA, like many insurance companies across the nation, does not cover the treatment for kids diagnosed with autism.
As for the reason, PEIA Director Ted Cheatham says simply that is policy of his organization.
Lorri Unumb of Autism Speaks, which advocates nationally for autism legislation, says there is no compelling reason for insurance companies not to cover ABA.
"ABA is the most commonly prescribed treatment protocol, and that's the one insurance companies are wholesale denying. And the typical reason is that it is experimental or investigational," says Unumb.
ABA therapy has been used on kids with autism for 40 years, says Unumb. "Who defines experimental? Because that sure doesn't sound like experimental to me."
"The insurers define experimental, and that's the gist of the problem," says Unumb.
Time is of the essence when treating kids with autism, and Max's parents knew that time was running out for them in West Virginia.
Faced with huge financial pressures and not wanting to miss their treatment window, Radcliff and Finn did what many autism parents do: They moved to a state where autism anti-discrimination legislation had been passed. Finn had a job opportunity in Florida, and they jumped on it.
Although the details of the legislation vary by state, all "autism anti-discrimination legislation," as it is called by advocates, compels insurance companies to cover ABA treatment for children with autism.
Twenty-three states have so far passed such legislation, and a controversial version of the bill is due on New York Gov. David Paterson's desk later this month, according to his office.
Complete story from CNN here