Gov. Nikki Haley's top health care adviser agrees that South Carolina should comply with a new federal rule that requires Medicaid to cover autism services for children. How many millions of dollars this will cost the state and exactly when children may start receiving the therapy are still unclear.
An estimated 9,000 children enrolled in the South Carolina Medicaid program fall on the autism spectrum and may qualify for services under the new federal rule.
To date, most of them have received little or no treatment for their symptoms, which may include difficulty communicating, trouble making eye contact, obsessive tendencies and emotional outbursts. Experts know that the autism spectrum disorders affect the way a child's brain works before birth, but they don't completely understand the disorders' origins, which may be genetic and environmental. The Centers for Disease Control and Prevention estimate one in 68 children are autistic - more than double the rate in 2000. The disorders are nearly five times more common in boys.
When South Carolina starts covering autism therapy for children enrolled in its low-income Medicaid program - probably within 12 months - the agency projects it may cost "well over $100 million" every year. That's money Medicaid Director Tony Keck says is worth spending, even though he's concerned that there are too few providers to meet this new need and he contests the way the federal Centers for Medicare & Medicaid Services changed its existing policy in July.
"We believe that our first dollars spent need to be on services to support individuals living with disabilities," said Keck, a member of Haley's Cabinet. "We don't agree with getting letters from CMS changing interpretations and unilaterally telling us to spend ... millions of dollars."
The new rule requires Medicaid to cover behavioral therapy for children with an autism disorder. That includes an effective, but expensive treatment called "applied behavioral analysis," which research has shown improves symptoms, especially when it's offered to young children. The intense therapy teaches them simple but useful lifelong skills - habits like talking to other children, sharing, using the toilet and setting a table.
"It is really the only therapy that has been proven to dramatically improve symptoms of autism," said Laura Carpenter, a Medical University of South Carolina psychologist. Applied behavioral analysis costs more than $10,000 per child per year and requires up to 40 hours of therapy each week.
Many states, including South Carolina, are not yet complying with the new rule, but most are discussing how they should proceed, said Andrea Maresca, the director of federal policy and strategy for the National Association of Medicaid Directors. "They are raising very significant concerns about cost."