Victoria Joyce was thrilled at the prospect of staying home to raise her twin daughters, and her husband’s salary gave her that option.
But then autism moved in. With it came many thousands of dollars in uncovered medical bills.
The twins, who just turned five years old, were diagnosed with autism at 2 1/2. In that time, the family exhausted its savings and spent nearly $50,000 a year out of pocket to pay for therapy that has helped the girls make enough progress to attend a mainstream school this year.
Joyce and her family had private insurance, but the children’s best hope for getting better was a type of intensive therapy that wasn’t covered.
“We’ve always been professionals and worked,” said Joyce, 34, a high school teacher. “And we still have private insurance, and it didn’t help us when we needed it most with our girls. We no longer have our retirement or savings because of this.”
Families across Georgia are in the same predicament.
A recent report from the Centers for Disease Control and Prevention says autism affects one child in 110. In Georgia, the rate is higher: one in 98. Yet, most states, including Georgia, do not require private insurers to cover essential autism treatment and services. The Georgia Legislature is considering a weak law on the issue.
Autism Spectrum Disorder (ASD) has no cure, but it is treatable. Treatment can include dietary changes, medicine, behavioral and educational intervention.
For Joyce’s children, two developmental pediatricians recommended applied behavior analysis therapy (ABA). Doctors suggested speech and occupational therapy, but also about 40 hours a week of one-on-one ABA therapy. The children weren’t responding to their names or looking at faces. They had two-hour tantrums. They didn’t play and instead lined up their toys or watched things that spin.
Still, they were diagnosed as high functioning, and Joyce said that made her more determined to assure they got therapy as early and as often as she could provide.
The family moved more than 100 miles to near Atlanta to get the best treatment. And Joyce had to go back to work, with her salary basically going toward the girls’ therapy
“It’s overwhelming,” she said, “how much they have improved.”
Experts say early intervention using lots of different kinds of therapies is critical for progress with autistic children.
The therapy is important, said Dr. Brian Freedman, clinical director of Kennedy Krieger Institute’s Center for Autism & Related Disorders. The center in Baltimore provides research, training and outpatient services.
“You want to tailor the intervention to the learning style of the child and what’s going to complement their strength and what their weaknesses are. ABA is one of several interventions that has been shown by research to be valid,” Freedman said.
In the last month, legislatures in Iowa, Kansas and Kentucky passed bills, which now go to each state’s governor for signature, expanding insurance coverage for autistic children. Fifteen other states have similar laws.
In Georgia last year, Senate President Pro Tem Tommie Williams (R-Lyons) pushed for legislation called “Ava’s Law,” named for his grandniece, who was diagnosed with ASD. The bill, opposed by insurers and the Georgia Chamber of Commerce, would require private insurers to cover medically necessary autism treatments and services. But lawmakers shelved it in a study committee.
The bill emerged in the current session. But a version that was approved in the Senate removed the mandate. Instead, it creates a task force by July 31 that would develop a plan for educating health professionals and parents about services, early intervention and funding, as well proposing public policy.
This new version heads to the House in the few remaining days of the session.
The Georgia Chamber said its opposition is based on objection to all mandates that increase costs for business-sponsored employee health benefits.
“It is a very difficult issue and is not made easily on just the economics,” said John Kruecer, the chamber’s senior vice president of public policy.
He said the chamber has met with autism advocacy groups in recent months but was unable to reach a compromise.
Autism Speaks, a national group advocating insurance changes, said its analysis shows the Georgia legislation would add only $21.20 per policyholder or about 0.63 percent.
In 2009, the Council for Affordable Health Insurance, an association of insurance carriers, estimated an autism coverage mandate increases the cost of health insurance by about 1 percent. With the number of autism cases growing, the council predicts the cost will move into the 1 percent to 3 percent range.
“If legislators want to help these families, they should create programs specifically targeted to meet their needs and properly fund them from general revenues ... rather than try to force the costs onto health insurance, which will just increase everyone’s premiums,” the council wrote in a position paper.
The recently passed federal health care reform law extends autism insurance through some health plans, primarily those to be offered, beginning in 2014, through state-based health insurance exchanges for individuals and small businesses.
A 2006 Harvard School of Public Health study estimated it costs $3.2 million to take care of an autistic person over a lifetime.
Joyce says she’s grateful her family had options, even at significant cost. But she adds that she’s sad for families who don’t have those choices.
“If these kids that don’t get early intervention, they become wards of the state and don’t become self-sufficient adults,” she said. “And they cost the state. You can spend a little in the beginning and save a lot on the end.”
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