Getting Personal Over Autism

Parents Seek Insurance Coverage to Help Them Cope

It's a good night if her 3-year-old son, Garath, sleeps past 4 a.m., Casandra Oldham says. It's not his fault, she adds -- his medicine makes him wake up early.

Even when he does sleep later, the Oldham family is up by 6 a.m. A health professional arrives at the house near Lansdowne soon afterward to work with Garath and his younger brother, Korlan, nearly 2, on their daily behavioral therapy. And the boys' mother must get an early start on preparing their medication -- a series of medical cocktails, multivitamins and anti-parasite treatments. Over the course of the morning, they will take at least 11 types of drugs.

The Oldham household operates with an acute sense of urgency. Garath and Korlan are autistic -- "locked behind a wall," as their mother puts it -- and their parents know that intensive intervention at a very young age offers the best hope for successful treatment.

Finding the money to pay for hours of therapy is a constant challenge that threatens to slow things down. So is the process of choosing the right therapist and the right technique.

"We just have to keep moving, though," Oldham said.

Oldham shared her story last week at the Loudoun County Autism Summit, a rally in support of a state bill that would require health insurers in Virginia to cover therapy services that her sons and many other autistic children receive.

Garath and Korlan follow a program known as applied behavior analysis, which has been approved by the U.S. surgeon general as a treatment for autism. Giving each of them the recommended 40 hours a week of therapy would cost about $14,000 a month, Oldham said, more than the family can afford.

So the parents have settled on 15 to 20 hours per child during the summer. During the school year, they supplement that with special education programs provided by the Loudoun school system.

The family's July bill for therapy services was $4,934, Oldham said.

"I'm finding myself forced to pick and choose which therapies we are going to do," she said. "Do I potty-train my older kid, or do I help my youngest learn how to speak?"

The state legislation, being reviewed by the General Assembly's Special Advisory Commission on Mandated Health Insurance Benefits, would require insurers to provide as much as about $36,000 per child in annual coverage for medical and social services to autistic children.

Doug Gray, executive director of the Virginia Association of Health Plans, said that none of the health insurers represented by his organization opposes the legislation. It is impossible not to feel sympathy for the families involved, Gray said.