Getting Personal Over Autism
Parents Seek Insurance Coverage to Help Them Cope

By Sydney Wilmer
loudounextra.com Staff Writer
Sunday, August 10, 2008

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.

But policymakers will have "a tough decision to make," he added, given the bill's likely effect on premiums.

"There are going to be impacts on the folks that buy benefits," Gray said. "Insurers will pass those costs on to people who have coverage."

Gray said that many small-business owners already have been dropping employee health coverage because of high costs. The number of small businesses offering coverage went from 69 percent in 2000 to 60 percent in 2005, and the cost of health insurance premiums increased by 6.1 percent last year, according to a report by the Kaiser Family Foundation.

Casandra Oldham and her husband, Bill, said the illness affecting two of their three children -- their oldest son, Tristan, is 6 -- has cost them their savings, their social lives and any sense of normalcy.

Many families with autistic children take out second mortgages. But the Oldhams, who bought their house two years ago -- before Garath's autism was diagnosed and Korlan was born -- said they owe more on their home than it is worth.

After the diagnoses for both boys, "we borrowed $20,000 from my mom and have turned to the community for help," Casandra Oldham said. "Otherwise, I don't know what we would do."

She is a fitness instructor, and the Oldhams organized a series of exercise classes in May as a fundraiser for Korlan's therapy.

In addition to the compromises they make on therapy services, they have to set financial limits on the medicine they give the boys, Oldham said.

"The cost is just too high," she said. "The calculation was $1,180 for both boys together last month. It is sometimes more, sometimes less, but we ask the doctors to try to keep it to $1,000 for both."

Other parents of autistic children tell similar stories of having to make agonizing financial choices. Loudoun County resident Cindy Davis said she has watched her autistic son improve with the help of experimental -- and expensive -- treatments.

"My son couldn't talk two years ago; he is almost mainstream now," she said in her comments at the autism summit.

"I know if I could afford everything, my babies would get better," Oldham said.

But families like the Oldhams also say that one of the most frustrating aspects of autism is the lack of proven therapies. Even the applied behavior analysis approved by the surgeon general guarantees only slight improvements.

The Oldhams said they cannot help but wonder whether other, more experimental techniques could improve their sons' lives. At the end of the summer, the family will explore that option by visiting a group of doctors in New York, paying $1,500 for testing.

Oldham said she knows she is not the only mother dealing with these issues -- as of December, there were 528 autistic children in Loudoun County public schools. But being in her home all the time, she said she feels isolated.

She said dealing with her sons' illness tries her patience and her faith.

"When Garath was diagnosed with autism, I prayed," she said. "And then Korlan got sick. . . . It makes you ask questions. It seems hopeless. It is completely overwhelming."

But the family continues to lean on its religious beliefs and its church, St. James' Episcopal in Leesburg, for support.

And Casandra Oldham takes solace in listening to Garath say a quick prayer she taught him.

Garath has the prayer memorized. "Dear God, help me," he says. After a pause, he looks up and adds, "All done."

Bill Oldham said he would love to see his children placed in mainstream classes at some point. But for now, he just wants to be able to tear down the wall.

"My hope right now is that they will be able to communicate -- that [for] the kid that is still there, we can reach out and bring him into society."