Positive Coverage in the Greenville News

Saturday, January 28

Families struggling to pay for autism care

Senator fights to get insurers to cover bills

By Liv Osby
HEALTH WRITER losby@greenvillenews.com

Ashley Covington took out a second mortgage.

Susan and John Sachs gave up vacations and new cars.

Lisa and Cliff Rollins used their son's college fund.

One way or another, they all paid for treatment -- treatment that can cost up to $50,000 a year -- to help their autistic children because their health insurance wouldn't cover it.

It's a situation that state Sen. Ray Cleary says amounts to discrimination against families with autistic children.

"The misery index of these families can't be measured," said Cleary, R-Charleston. "Many have to sacrifice a great deal."

So he has sponsored a bill that would require insurers to pay for treatment -- a fix the insurance industry opposes.

Autism is a set of developmental, communication and social interaction disorders that strikes between one in 166 to 500 children, afflicting about 9,000 people in the Palmetto State, boys four times more than girls, according to the South Carolina Autism Society.

Intensive early intervention can help these children reach their maximum potential, says Dr.
Pierrette "Mimi" Poinsett, a California pediatrician who specializes in disorders like autism. It can keep them out of more costly special education classes and institutions, and help them to become productive citizens.

But according to parents, insurers argue they should not cover such treatment because it's experimental, educational or not medically necessary, or because they consider autism a mental illness or an incurable lifelong disability.

Larry Akey, spokesman for the trade group America's Health Insurance Plans, said he doesn't know if it's standard in the industry to deny coverage for autism; it is covered in a number of states.

Most employer-sponsored insurance plans exclude experimental treatments, he said. And autism is considered a mental illness and subject to the same coverage limits as other such disorders in a policy.

However, Akey said he's never heard that treatment was denied because it was considered educational or a lifelong disability.

"We cover any number of lifelong disabilities," he said.

Susan Sachs of Simpsonville says her insurer denied coverage for her son, Michael, now 13, saying his was an educational disability.

"The first year, we spent $35,000," she said .

One of the greatest sacrifices the Sachs family has made to provide treatment involves time. John, an engineer, has taken better-paying work out of state to pay for therapy. For the past two years, Susan says, he's been in Kuwait.

"We didn't eat out. Didn't have cable TV. We drove old clunkers. And we have gone through every penny we've ever had," she says. "But the biggest sacrifice is that my husband has taken out-of-town jobs because of the money he could make.

"In the last eight years," she added, "he's been home maybe a total of three years. He's missed a lot of his child's life."

But thanks to that therapy, Sachs says, Michael, who was diagnosed in 1996, has made tremendous progress, and she expects he'll become a successful adult.

Developed in the 1960s and once considered an "alternative" therapy, intense early intervention has been standard treatment for about 10 years, said Dr. Desmond Kelly, medical director of the division of developmental-behavioral pediatrics at Greenville Hospital System Children's Hospital.

"There's no doubt that it is beneficial," he said. "It results in improvement of the child's physical symptoms and their functioning capacity."

In fact, he says, research shows that up to half of all autistic children will improve with early intervention, and go on to succeed in school and hold down jobs as adults.

A year of that therapy took Lisa Rollins' son Walker from losing the 20 words he had mastered by the age of 2 to speaking more than 1,000 now at age 3. But it costs $5,000 a week, and insurance doesn't pay for any of it, she said.

"We've been spending money that we had saved for college," said Rollins, of Saluda. "But there are lots of families who have taken second mortgages, or moved to smaller homes, or gone into debt."

For most parents, providing therapy is a great financial burden, says Kelly. And those who can't do it feel a terrible sense of guilt.

Besides a second mortgage, Covington, of Greenville, borrowed on her life insurance and gets help from her parents to pay for therapy for son, Chas, 6.

"It's been a strain on the pocketbook," said Covington, a consultant for a health and wellness company. "But you'll sacrifice anything for your children."

Like many parents of autistic children, Susan Kastner quit her job to care for son, Andrew, now 11.

"Getting your child to therapy would require missing work," she says. "We used to juggle who's taking him to therapy today, and it became too stressful to worry about missing work to take care of your child."

Rollins says she can't understand why therapy, which typically lasts two or three years, isn't covered like it is for other neurological disorders, such as stroke or brain injuries. Treatment is prescribed by a physician and is medically necessary, she says.

And Cleary says it's penny-wise and pound-foolish not to cover autism. Compare $150,000 for three years of treatment with up to $3 million for lifetime institutionalization, he says.

"With maybe two, three years of this intensive treatment, 47 percent of these children can be mainstreamed and become functional, taxpaying citizens," he said, "instead of non-productive, non-functioning lives."

The rest also make progress, he says.

Sachs adds that autistic children have only one shot, and that's through intensive early intervention.

"We have an opportunity to give these children their lives back, these families their hope back, and you can only do that on the front end," she said. "Either we do this now, or we're looking at group homes and institutions."

But Akey said the industry opposes mandates on insurers, saying purchasers are better able to make decisions about coverage than lawmakers. Mandates typically result in higher premiums for subscribers, he said, and often don't account for evolving therapies.

"The purchasers of health insurance decide what they want to have covered," Akey said. "We'll cover any illness or injury that people want to buy insurance policies to cover."

The bill, S.0958, is currently in the Senate Banking and Insurance Committee. Rollins says she's optimistic it will come to a vote this spring.

Cleary said, "These children with autism should not be discriminated against." She said, "It's the right thing to do and I'm hoping the legislators will realize that."